H.R. 8794

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8794 Introduced in House (IH)]

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119th CONGRESS
2d Session
H. R. 8794

To provide for increased research and initiatives related to bleeding 
disorders in underserved populations, and for other purposes.

_______________________________________________________________________

IN THE HOUSE OF REPRESENTATIVES

May 13, 2026

Ms. Johnson of Texas (for herself, Mr. Wilson of South Carolina, and 
Ms. McBride) introduced the following bill; which was referred to the 
Committee on Energy and Commerce

_______________________________________________________________________

A BILL

To provide for increased research and initiatives related to bleeding 
disorders in underserved populations, 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 ``Fostering Effective Diagnosis and 
Treatment for Underserved Populations with Bleeding Disorders Act of 
2026'' or the ``FED UP with Bleeding Disorders Act of 2026''.

SEC. 2. FINDINGS.

Congress finds the following:
(1) Current data estimates that as many as 1 percent of 
women in the United States may have a bleeding disorder, and 
many are unaware of their condition.
(2) Women have reported delays in diagnosis of 16 years or 
more.
(3) Increasing timely diagnosis for women with von 
Willebrand disease aligns with public health goals outlined in 
Healthy People 2030 supported by the Department of Health and 
Human Services Office of Disease Prevention and Health 
Promotion.
(4) Without diagnosis, women cannot receive proper care and 
treatment from a provider with the requisite expertise, such as 
a hemophilia treatment center, which provides specialized care 
for people with bleeding disorders. Mortality rates and 
hospitalization rates for bleeding complications from 
hemophilia are 40 percent lower among all people who receive 
care in hemophilia treatment centers than among those who did 
not receive this care.
(5) Women with bleeding disorders are at higher risk of 
adverse pregnancy outcomes.
(6) As many as 50 percent of girls and women who are 
carriers for hemophilia A or B have factor VIII or IX levels 
below 50 percent and are at risk for bleeding symptoms or heavy 
bleeding related to menstruation or pregnancy. In severe cases, 
a hysterectomy is a recommended treatment option for heavy 
menstrual bleeding. More research into women and bleeding 
disorders could help to avoid unnecessary hysterectomies and 
preserve fertility.
(7) The annual direct economic cost of heavy menstrual 
bleeding is $1,000,000,000. The annual indirect cost is 
$12,000,000,000.
(8) Research into bleeding disorders and clotting factors 
is beneficial for the United States military and its blood 
research program as well as efforts to prevent or treat 
bleeding that results from severe injury or trauma.

SEC. 3. INTERAGENCY REVIEW RELATED TO BLEEDING DISORDERS IN CERTAIN 
POPULATIONS.

(a) In General.--The Secretary of Health and Human Services (in 
this Act referred to as the ``Secretary'') shall conduct a review of, 
and serve as the lead agency head responsible for reviewing, and as 
necessary and appropriate, updating Federal programs, activities, and 
strategic plans related to--
(1) the state of the science on bleeding disorders in women 
and girls;
(2) training and education of providers on issues specific 
to women and girls and bleeding disorders;
(3) access to treatment and services for women and girls 
with bleeding disorders, including--
(A) care delivered at hemophilia treatment centers;
(B) care delivered in other clinical settings; and
(C) access barriers specific to women and girls 
living in rural and underserved areas; and
(4) inclusion of women and girls in clinical research 
related to bleeding disorders.
(b) Report.--Not later than two years after the date of the 
enactment of this Act, the Secretary shall submit to the Committee on 
Energy and Commerce and the Committee on Appropriations of the House of 
Representatives and the Committee on Health, Education, Labor, and 
Pensions and the Committee on Appropriations of the Senate, and make 
available on the public website of the Department of Health and Human 
Services, a comprehensive report on the review under subsection (a), 
which shall include--
(1) a summary of the review, including a detailed 
assessment of previous and ongoing research and activities 
related to each area specified in subsection (a);
(2) a description of recommendations on how to improve on 
each of the areas specified in subsection (a), related to 
Federal programs, activities, or strategic plans based on the 
findings of such review; and
(3) the Secretary's recommendations on areas for improved 
coordination between relevant Federal agencies and programs, 
including Federal agencies that focus on scientific and 
clinical research, including--
(A) the Department of Health and Human Services;
(B) the Centers for Medicare & Medicaid Services;
(C) the Health Resources and Services 
Administration;
(D) the Centers for Disease Control and Prevention;
(E) the National Institutes of Health;
(F) the Department of Veterans Affairs;
(G) the Defense Health Agency; and
(H) the Food and Drug Administration.
(c) Public Comment Period.--During the period of the review under 
subsection (a) and during the period of preparing of the report under 
subsection (b), the Secretary shall provide for a public comment 
period. The Secretary shall consider comments received during each such 
public comment period in conducting such review and preparing such 
report, especially comments received from--
(1) individuals living with bleeding disorders;
(2) national bleeding disorders patient and provider 
advocacy organizations; and
(3) entities receiving Federal funds under a Federal 
program providing for research on bleeding disorders.
(d) Bleeding Disorder Defined.--In this section, the term 
``bleeding disorder'' means an inheritable disorder which--
(1) involves an impairment in the blood's ability to form a 
proper clot, including hemophilia, von Willebrand disease, and 
rare factor deficiencies; and
(2) can cause extended bleeding (internal as well as 
external), spontaneously or in response to injury, surgery, 
trauma, menstruation, or childbirth.

SEC. 4. NATIONAL PUBLIC EDUCATION AND AWARENESS CAMPAIGN WITH RESPECT 
TO WOMEN AND GIRLS AND BLEEDING DISORDERS.

(a) In General.--Not later than one year after the date on which 
the report under section 3 is published, the Secretary, utilizing the 
information from such report and in coordination with other Federal 
offices and agencies, as appropriate, shall award competitive grants or 
contracts to one or more public or private entities to carry out a 
national, evidence-based education and awareness campaign with the aim 
of improving awareness of, and diagnosis and treatment of, women and 
girls with bleeding disorder.
(b) Consultation.--In carrying out the campaign under this section, 
the Secretary shall consult with appropriate stakeholders, including 
national bleeding disorders organizations, national provider 
organizations, and the recipients of Federal grants relating to 
hemophilia.
(c) Requirements.--The campaign under this section shall--
(1) be a nationwide, evidence-based campaign related to 
bleeding disorders in women and girls that is aimed at women 
and girls and at providers, including school nurses, 
pediatricians, primary care physicians, family medicine 
physicians, obstetricians and gynecologists, and hematologists;
(2) utilize strategies to ensure individuals living in 
rural and underserved areas are reached;
(3) include culturally and linguistically appropriate 
resources, as applicable; and
(4) include the dissemination of information and 
communication resources related to women and girls with 
bleeding disorders to public health departments, health care 
providers, schools, medical schools and health care facilities, 
including such providers and facilities that provide prenatal 
and pediatric care.
(d) Evaluation.--The Secretary shall--
(1) establish benchmarks and conduct qualitative 
assessments regarding the awareness campaign under this 
section; and
(2) before the end of the last fiscal year for which 
funding under subsection (e) is available, prepare and submit 
to the Committee on Health, Education, Labor, and Pensions of 
the Senate and Committee on Energy and Commerce of the House of 
Representatives an evaluation of the awareness campaign under 
this section.
(e) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $10,000,000 for each of fiscal 
years 2027 through 2031.
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