I 118th CONGRESS 2d Session H. R. 8565 IN THE HOUSE OF REPRESENTATIVES May 23, 2024 Ms. Williams of Georgia (for herself, Ms. Underwood , Mrs. González-Colón , Ms. Adams , and Mrs. Sykes ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To advance research, promote awareness, and provide patient support with respect to endometriosis, and for other purposes.

1. Short title This Act may be cited as the Endometriosis Coverage, Awareness, Research, and Education Act or the Endometriosis CARE Act . 2. Findings The Congress finds as follows: (1) Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and make it harder to get pregnant. Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant. (2) It causes a chronic inflammatory reaction that may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body. The cause of endometriosis is unknown. There is no known way to prevent endometriosis. There is no cure, but its symptoms can be treated with medicines or, in some cases, surgery 3. Advancing endometriosis data collection, surveillance, and research (a) In general The Director of the National Institutes of Health (in this section referred to as the Director ) shall conduct or support data collection, surveillance, and research related to endometriosis. (b) Use of funds In carrying out subsection (a), the Director may— (1) conduct or support research and related activities regarding endometriosis, including research to improve treatment options and develop a cure for endometriosis; (2) establish or expand an internet clearinghouse to catalog existing endometriosis research, treatment options, and related information for patients and health care professionals; or (3) carry out related activities as determined by the Director. (c) Authorization of appropriations To carry out this section, there is authorized to be appropriated $50,000,000 for each of fiscal years 2025 through 2029. 4. Identifying barriers to accessing treatments for endometriosis symptoms (a) Research The Secretary shall conduct an analysis of barriers that individuals diagnosed with endometriosis face in accessing treatments for endometriosis symptoms, including transportation barriers and barriers caused by health care professional shortages. (b) Topics In carrying out the analysis under subsection (a), the Secretary may— (1) 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 Programs; and (2) 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 issuer. (c) Data collection To carry out the analysis under subsection (a), the Secretary may require— (1) 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 symptoms, including a lack of insurance coverage or cost-sharing requirements for such treatments; and (2) 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 System, including data stratified by relevant demographic characteristics. (d) Privacy requirements In carrying out the analysis under subsection (a), the Secretary shall ensure that the privacy and confidentiality of individual patients are protected in a manner consistent with relevant privacy and confidentiality laws. (e) Report Not later than two years after the date of enactment of this Act, 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 section. 5. Education and dissemination of information with respect to endometriosis (a) Endometriosis public education program The Secretary shall develop and disseminate to the public information regarding endometriosis, including information on— (1) the awareness, incidence, and prevalence of endometriosis, with a particular focus on individuals from racial and ethnic minority groups and other underserved groups; (2) culturally and linguistically appropriate support that is available to address the mental health impacts of endometriosis; and (3) the availability, as medically appropriate, of the range of treatment options for symptoms of endometriosis. (b) Dissemination of information The Secretary may disseminate information under subsection (a) directly or through arrangements with intra-agency initiatives, nonprofit organizations, consumer groups, institutions of higher education, or Federal, State, or local public private partnerships. (c) Authorization of appropriations To carry out this section, there is authorized to be appropriated $2,000,000 for each of fiscal years 2025 through 2029. 6. Information to health care providers with respect to endometriosis (a) Dissemination of information The Secretary shall, in consultation with relevant health care professional societies and associations, disseminate information to health care professionals, health care-related organizations, and health systems to promote evidence-based care for individuals with endometriosis, including information related to— (1) detecting and diagnosing endometriosis; (2) providing care for individuals with endometriosis; (3) communicating with patients about endometriosis; and (4) related topics. (b) Authorization of appropriations To carry out this section, there is authorized to be appropriated $2,000,000 for each of fiscal years 2025 through 2029. 7. Endometriosis disparities study through National Academies (a) In general The Secretary shall seek to enter an agreement, not later than 90 days after the date of enactment of this Act, with the National Academies of Sciences, Engineering, and Medicine (referred to in this section as the National Academies ) under which the National Academies agree to conduct a study on endometriosis disparities. (b) Study requirements The agreement under subsection (a) shall direct the National Academies to— (1) assess endometriosis prevalence, detection, treatment, and outcome disparities by race, ethnicity, geography, primary language, sexual orientation, gender identity, disability status, and insurance status, and related topics as determined by the Secretary; and (2) make recommendations to the Congress, Federal agencies, health care professionals, and other relevant stakeholders based on the National Academies’ findings pursuant to paragraph (1). (c) Report The agreement under subsection (a) shall direct the National Academies to complete the study under this section, and transmit to the Congress and make publicly available a report on the results of the study, not later than 24 months after the date of enactment of this Act. (d) Authorization of appropriations To carry out this section, there is authorized to be appropriated $500,000. 8. Definitions In this Act: (1) The term institution of higher education has the meaning given to such term in section 101 of the Higher Education Act of 1965 ( 20 U.S.C. 1001 ). (2) The term racial and ethnic minority group has the meaning given such term in section 1707(g) of the Public Health Service Act ( 42 U.S.C. 300u–6(g) ). (3) The term Secretary means the Secretary of Health and Human Services.