Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2023
This bill directs the Department of Health and Human Services (HHS) to expand research on, and take other actions to address, uterine fibroids. These are muscular tumors that grow in the wall of the uterus and may cause pain, heavy menstrual bleeding, and reproductive issues.
In coordination with the National Institutes of Health and appropriate federal agencies, HHS must undertake research activities on uterine fibroids.
In addition, HHS must establish a database of services furnished to individuals diagnosed with uterine fibroids under Medicaid or the Children's Health Insurance Program and must develop a report on federal and state expenditures for such services.
Additionally, HHS must disseminate information on uterine fibroids to the public and to health care providers, including information on the elevated risk for minority women and available treatments.
[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4572 Introduced in House (IH)]
<DOC>
118th CONGRESS
1st Session
H. R. 4572
To provide for research and education with respect to uterine fibroids,
and for other purposes.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
July 12, 2023
Ms. Clarke of New York (for herself, Mrs. Watson Coleman, Mr. David
Scott of Georgia, and Ms. Kelly of Illinois) introduced the following
bill; which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To provide for research and education with respect to uterine fibroids,
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 ``Stephanie Tubbs Jones Uterine
Fibroid Research and Education Act of 2023''.
SEC. 2. FINDINGS.
Congress finds as follows:
(1) It is estimated that 20 percent to 50 percent of women
of reproductive age currently have uterine fibroids, and up to
77 percent of women will develop fibroids before menopause.
(2) In the United States, an estimated 26,000,000 women
between the ages of 15 and 50 have uterine fibroids, and
approximately 15,000,000 of these individuals experience
symptoms. Uterine fibroids may cause significant morbidity
through their presence in the uterus and pelvic cavity, and
symptoms can include pelvic pain, severe menstrual bleeding,
iron-deficiency anemia, fatigue, bladder or bowel dysfunction,
infertility, and pregnancy complications and loss.
(3) The pain, discomfort, stress, and other physical and
emotional symptoms of living with fibroids may significantly
interfere with a woman's quality of life, compromising her
ability to function normally or work or care for her family,
and may lead to more severe health and wellness issues.
(4) Most women will experience uterine fibroids by the age
of 50, yet few data exist describing the overall patient
experience with fibroids.
(5) Many people with fibroids are likely undiagnosed.
Patients wait on average 3.6 years before seeking treatment,
and over 40 percent of patients see two or more health care
providers prior to receiving a diagnosis, underscoring the need
for improved awareness and education.
(6) People of color are more likely to develop uterine
fibroids. It is estimated that more than 80 percent of Black
women and about 70 percent of White women develop fibroids by
the time they reach menopause. Black individuals with fibroids
have also been shown to have more severe symptoms and develop
early-onset uterine fibroids that develop into larger tumors.
(7) Current research and available data do not provide
adequate information on the prevalence and incidence of
fibroids in Asian, Hispanic, and Black individuals.
(8) Symptomatic uterine fibroids can cause reproductive
problems, including infertility. People with uterine fibroids
are much more likely to miscarry during early pregnancy than
people without them.
(9) According to the Evidence Report Summary on the
Management of Uterine Fibroids, as compiled by the Agency for
Healthcare Research and Quality of the Department of Health and
Human Services, there is a ``remarkable lack of high-quality
evidence supporting the effectiveness of most interventions for
symptomatic fibroids''.
(10) Most medical options for managing fibroid symptoms
regulate or suppress menstruation and prevent pregnancy. There
is a great need for minimally invasive, fertility-friendly
therapies, as well as biomarkers, imaging assessments, or risk-
based algorithms that can help predict patient response to
therapy.
(11) The presence of symptomatic uterine fibroids is the
most common reason for hysterectomies, accounting for 39
percent of hysterectomies annually in the United States.
Approximately 42 per 1,000 women are hospitalized annually
because of uterine fibroids, but Black patients have higher
rates of hospitalization, hysterectomies, and myomectomies
compared to White women. Uterine fibroids are also the leading
cause of hospitalization related to a gynecological disorder.
(12) The personal and societal costs of uterine fibroids in
the United States are significant. Uterine fibroid tumors have
been estimated to cost the United States $5,900,000,000 to
$34,400,000,000 annually. The annual direct costs, including
surgery, hospital admissions, outpatient visits, and
medications, were estimated at $4,100,000,000 to $9,400,000,000
annually. Estimated lost work-hour costs ranged from
$1,550,000,000 to $17,200,000,000 annually. Obstetric outcomes
that were attributed to fibroid tumors resulted in costs of
$238,000,000 to $7,760,000,000 annually.
(13) At the Federal level, uterine fibroid research remains
drastically underfunded as compared to patient disease burden.
In 2019, fibroid research received about $17,000,000 in funding
from the National Institutes of Health, putting it in the
bottom 50 of 292 funded conditions.
SEC. 3. RESEARCH WITH RESPECT TO UTERINE FIBROIDS.
(a) Research.--The Secretary of Health and Human Services (referred
to in this Act as the ``Secretary'') shall expand, intensify, and
coordinate programs for the conduct and support of research with
respect to uterine fibroids.
(b) Administration and Coordination.--The Secretary shall carry out
the conduct and support of research pursuant to subsection (a), in
coordination with the appropriate institutes, offices, and centers of
the National Institutes of Health and any other relevant Federal
agency, as determined by the Director of the National Institutes of
Health.
(c) Authorization of Appropriations.--For the purpose of carrying
out this section, there are authorized to be appropriated $30,000,000
for each of fiscal years 2024 through 2028.
SEC. 4. RESEARCH WITH RESPECT TO MEDICAID COVERAGE OF UTERINE FIBROIDS
TREATMENT.
(a) Research.--The Secretary (or the Secretary's designee) shall
establish a research database, or expand an existing research database,
to collect data on services furnished to individuals diagnosed with
uterine fibroids under a State plan (or a waiver of such a plan) under
the Medicaid program under title XIX of the Social Security Act (42
U.S.C. 1396 et seq.) or under a State child health plan (or a waiver of
such a plan) under the Children's Health Insurance Program under title
XXI of such Act (42 U.S.C. 1397aa et seq.) for the treatment of such
fibroids for purposes of assessing the frequency at which such
individuals are furnished such services.
(b) Report.--
(1) In general.--Not later than the date that is two years
after the date of the enactment of this Act, the Secretary
shall submit to Congress a report on the amount of Federal and
State expenditures with respect to services furnished for the
treatment of uterine fibroids under State plans (or waivers of
such plans) under the Medicaid program under such title XIX and
State child health plans (or waivers of such plans) under the
Children's Health Insurance Program under such title XXI.
(2) Coordination.--The Secretary shall coordinate the
development and submission of the report required under
paragraph (1) with any other relevant Federal agency, as
determined by the Secretary.
SEC. 5. EDUCATION AND DISSEMINATION OF INFORMATION WITH RESPECT TO
UTERINE FIBROIDS.
(a) Uterine Fibroids Public Education Program.--The Secretary shall
develop and disseminate to the public information regarding uterine
fibroids, including information on--
(1) the awareness, incidence, and prevalence of uterine
fibroids among individuals, including all minority individuals;
(2) the elevated risk for minority individuals to develop
uterine fibroids; and
(3) the availability, as medically appropriate, of the
range of treatment options for symptomatic uterine fibroids,
including non-hysterectomy treatments and procedures.
(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 (as defined in section 101 of the
Higher Education Act of 1965 (20 U.S.C. 1001)), or Federal, State, or
local public private partnerships.
(c) Authorization of Appropriations.--For the purpose of carrying
out this section, there are authorized to be appropriated such sums as
may be necessary for each of fiscal years 2024 through 2028.
SEC. 6. INFORMATION TO HEALTH CARE PROVIDERS WITH RESPECT TO UTERINE
FIBROIDS.
(a) Dissemination of Information.--The Secretary shall, in
consultation and in accordance with guidelines from relevant medical
societies, work with health care-related specialty societies and health
systems to promote evidence-based care for individuals with fibroids.
Such efforts shall include minority individuals who have an elevated
risk to develop uterine fibroids and the range of available options for
the treatment of symptomatic uterine fibroids, including non-
hysterectomy drugs and devices approved under the Federal Food, Drug,
and Cosmetic Act (21 U.S.C. 301 et seq.).
(b) Authorization of Appropriations.--For the purpose of carrying
out this section, there are authorized to be appropriated such sums as
may be necessary for each of the fiscal years 2024 through 2028.
SEC. 7. DEFINITION.
In this Act, the term ``minority individuals'' means individuals
who are members of a racial and ethnic minority group, as defined in
section 1707(g) of the Public Health Service Act (42 U.S.C. 300u-6(g)).
<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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