[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8565 Introduced in House (IH)]

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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. Gonzalez-
Colon, 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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Endometriosis Coverage, Awareness, 
Research, and Education Act'' or the ``Endometriosis CARE Act''.

SEC. 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

SEC. 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.

SEC. 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.

SEC. 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.

SEC. 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.

SEC. 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.

SEC. 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.
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