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[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8565 Introduced in House (IH)]
<DOC>
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.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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