Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021
Bill: S.2444 | Sponsor: Sen. Booker, Cory A. (D-NJ)
Policy area: Health

Summary:
Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021
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.

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 2021''.

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 2 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 
        also have 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, 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 Secretary and 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 2022 through 2026.

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 2 years 
        after the date of 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 2022 through 2026.

SEC. 6. INFORMATION TO HEALTH CARE PROVIDERS WITH RESPECT TO UTERINE 
              FIBROIDS.

    (a) Dissemination of Information.--The Secretary of Health and 
Human Services 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 2022 through 2026.

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)).
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