I 

118TH CONGRESS 

2D SESSION H. R. 8565 

To advance research, promote awareness, and provide patient support with 

respect to endometriosis, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 23, 2024 

Ms. WILLIAMS of Georgia (for herself, Ms. UNDERWOOD, Mrs. GONZA ́LEZCOLO ́N, 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 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Endometriosis Cov5 erage, Awareness, Research, and Education Act’’ or the 

6 ‘‘Endometriosis CARE Act’’. 

7 SEC. 2. FINDINGS. 

8 The Congress finds as follows: 


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1 (1) Endometriosis is a disease in which tissue 

2 similar to the lining of the uterus grows outside the 

3 uterus. It can cause severe pain in the pelvis and 

4 make it harder to get pregnant. Endometriosis often 

5 causes severe pain in the pelvis, especially during 

6 menstrual periods. Some people also have pain dur7 ing sex or when using the bathroom. Some people 

8 have trouble getting pregnant. 

9 (2) It causes a chronic inflammatory reaction 

10 that may result in the formation of scar tissue (ad11 hesions, fibrosis) within the pelvis and other parts of 

12 the body. The cause of endometriosis is unknown. 

13 There is no known way to prevent endometriosis. 

14 There is no cure, but its symptoms can be treated 

15 with medicines or, in some cases, surgery 

16 SEC. 3. ADVANCING ENDOMETRIOSIS DATA COLLECTION, 

17 SURVEILLANCE, AND RESEARCH. 

18 (a) IN GENERAL.—The Director of the National In19 stitutes of Health (in this section referred to as the ‘‘Di20 rector’’) shall conduct or support data collection, surveil21 lance, and research related to endometriosis. 

22 (b) USE OF FUNDS.—In carrying out subsection (a), 

23 the Director may— 

24 (1) conduct or support research and related ac25 tivities regarding endometriosis, including research 


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1 to improve treatment options and develop a cure for 

2 endometriosis; 

3 (2) establish or expand an internet clearing4 house to catalog existing endometriosis research, 

5 treatment options, and related information for pa6 tients and health care professionals; or 

7 (3) carry out related activities as determined by 

8 the Director. 

9 (c) AUTHORIZATION OF APPROPRIATIONS.—To carry 

10 out this section, there is authorized to be appropriated 

11 $50,000,000 for each of fiscal years 2025 through 2029. 

12 SEC. 4. IDENTIFYING BARRIERS TO ACCESSING TREAT13 MENTS FOR ENDOMETRIOSIS SYMPTOMS. 

14 (a) RESEARCH.—The Secretary shall conduct an 

15 analysis of barriers that individuals diagnosed with endo16 metriosis face in accessing treatments for endometriosis 

17 symptoms, including transportation barriers and barriers 

18 caused by health care professional shortages. 

19 (b) TOPICS.—In carrying out the analysis under sub20 section (a), the Secretary may— 

21 (1) assess data from the Transformed Medicaid 

22 Statistical Information System related to services 

23 furnished to individuals diagnosed with endo24 metriosis for the treatment of endometriosis sympVerDate Sep 11 2014 20:26 Jul 10, 2024 Jkt 049200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H8565.IH H8565

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1 toms under State Medicaid programs and Children’s 

2 Health Insurance Programs; and 

3 (2) assess data related to services furnished to 

4 individuals diagnosed with endometriosis for the 

5 treatment of endometriosis symptoms under group 

6 health plans or group or individual health insurance 

7 coverage offered by a health insurance issuer. 

8 (c) DATA COLLECTION.—To carry out the analysis 

9 under subsection (a), the Secretary may require— 

10 (1) group health plans or issuers of group or in11 dividual health insurance coverage to provide such 

12 information as may be required to assess barriers 

13 that individuals diagnosed with endometriosis face in 

14 accessing treatments for endometriosis symptoms, 

15 including a lack of insurance coverage or cost-shar16 ing requirements for such treatments; and 

17 (2) State Medicaid programs and Children’s 

18 Health Insurance Programs to collect and report 

19 data related to services furnished to individuals diag20 nosed with endometriosis for the treatment of endo21 metriosis symptoms through the Transformed Med22 icaid Statistical Information System, including data 

23 stratified by relevant demographic characteristics. 

24 (d) PRIVACY REQUIREMENTS.—In carrying out the 

25 analysis under subsection (a), the Secretary shall ensure 


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1 that the privacy and confidentiality of individual patients 

2 are protected in a manner consistent with relevant privacy 

3 and confidentiality laws. 

4 (e) REPORT.—Not later than two years after the date 

5 of enactment of this Act, the Secretary shall submit to 

6 the Congress and make publicly available on the website 

7 of the Department of Health and Human Services a report 

8 on the analysis carried out under this section. 

9 SEC. 5. EDUCATION AND DISSEMINATION OF INFORMATION 

10 WITH RESPECT TO ENDOMETRIOSIS. 

11 (a) ENDOMETRIOSIS PUBLIC EDUCATION PRO12 GRAM.—The Secretary shall develop and disseminate to 

13 the public information regarding endometriosis, including 

14 information on— 

15 (1) the awareness, incidence, and prevalence of 

16 endometriosis, with a particular focus on individuals 

17 from racial and ethnic minority groups and other 

18 underserved groups; 

19 (2) culturally and linguistically appropriate sup20 port that is available to address the mental health 

21 impacts of endometriosis; and 

22 (3) the availability, as medically appropriate, of 

23 the range of treatment options for symptoms of 

24 endometriosis. 


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1 (b) DISSEMINATION OF INFORMATION.—The Sec2 retary may disseminate information under subsection (a) 

3 directly or through arrangements with intra-agency initia4 tives, nonprofit organizations, consumer groups, institu5 tions of higher education, or Federal, State, or local public 

6 private partnerships. 

7 (c) AUTHORIZATION OF APPROPRIATIONS.—To carry 

8 out this section, there is authorized to be appropriated 

9 $2,000,000 for each of fiscal years 2025 through 2029. 

10 SEC. 6. INFORMATION TO HEALTH CARE PROVIDERS WITH 

11 RESPECT TO ENDOMETRIOSIS. 

12 (a) DISSEMINATION OF INFORMATION.—The Sec13 retary shall, in consultation with relevant health care pro14 fessional societies and associations, disseminate informa15 tion to health care professionals, health care-related orga16 nizations, and health systems to promote evidence-based 

17 care for individuals with endometriosis, including informa18 tion related to— 

19 (1) detecting and diagnosing endometriosis; 

20 (2) providing care for individuals with endo21 metriosis; 

22 (3) communicating with patients about endo23 metriosis; and 

24 (4) related topics. 


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1 (b) AUTHORIZATION OF APPROPRIATIONS.—To carry 

2 out this section, there is authorized to be appropriated 

3 $2,000,000 for each of fiscal years 2025 through 2029. 

4 SEC. 7. ENDOMETRIOSIS DISPARITIES STUDY THROUGH 

5 NATIONAL ACADEMIES. 

6 (a) IN GENERAL.—The Secretary shall seek to enter 

7 an agreement, not later than 90 days after the date of 

8 enactment of this Act, with the National Academies of 

9 Sciences, Engineering, and Medicine (referred to in this 

10 section as the ‘‘National Academies’’) under which the Na11 tional Academies agree to conduct a study on endo12 metriosis disparities. 

13 (b) STUDY REQUIREMENTS.—The agreement under 

14 subsection (a) shall direct the National Academies to— 

15 (1) assess endometriosis prevalence, detection, 

16 treatment, and outcome disparities by race, eth17 nicity, geography, primary language, sexual orienta18 tion, gender identity, disability status, and insurance 

19 status, and related topics as determined by the Sec20 retary; and 

21 (2) make recommendations to the Congress, 

22 Federal agencies, health care professionals, and 

23 other relevant stakeholders based on the National 

24 Academies’ findings pursuant to paragraph (1). 


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1 (c) REPORT.—The agreement under subsection (a) 

2 shall direct the National Academies to complete the study 

3 under this section, and transmit to the Congress and make 

4 publicly available a report on the results of the study, not 

5 later than 24 months after the date of enactment of this 

6 Act. 

7 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

8 out this section, there is authorized to be appropriated 

9 $500,000. 

10 SEC. 8. DEFINITIONS. 

11 In this Act: 

12 (1) The term ‘‘institution of higher education’’ 

13 has the meaning given to such term in section 101 

14 of the Higher Education Act of 1965 (20 U.S.C. 

15 1001). 

16 (2) The term ‘‘racial and ethnic minority 

17 group’’ has the meaning given such term in section 

18 1707(g) of the Public Health Service Act (42 U.S.C. 

19 300u–6(g)). 

20 (3) The term ‘‘Secretary’’ means the Secretary 

21 of Health and Human Services. 

Æ 


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