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”.
Fostering Effective Diagnosis and Treatment for Underserved Populations with Bleeding Disorders Act of 2026
A BILL
To provide for increased research and initiatives related to bleeding disorders in underserved populations, and for other purposes.
Sec. 2 Findings
Congress finds the following:
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.
Women have reported delays in diagnosis of 16 years or more.
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.
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.
Women with bleeding disorders are at higher risk of adverse pregnancy outcomes.
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.
The annual direct economic cost of heavy menstrual bleeding is $1,000,000,000. The annual indirect cost is $12,000,000,000.
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
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—
the state of the science on bleeding disorders in women and girls;
training and education of providers on issues specific to women and girls and bleeding disorders;
access to treatment and services for women and girls with bleeding disorders, including—
care delivered at hemophilia treatment centers;
care delivered in other clinical settings; and
access barriers specific to women and girls living in rural and underserved areas; and
inclusion of women and girls in clinical research related to bleeding disorders.
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—
a summary of the review, including a detailed assessment of previous and ongoing research and activities related to each area specified in subsection (a);
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
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—
the Department of Health and Human Services;
the Centers for Medicare & Medicaid Services;
the Health Resources and Services Administration;
the Centers for Disease Control and Prevention;
the National Institutes of Health;
the Department of Veterans Affairs;
the Defense Health Agency; and
the Food and Drug Administration.
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—
individuals living with bleeding disorders;
national bleeding disorders patient and provider advocacy organizations; and
entities receiving Federal funds under a Federal program providing for research on bleeding disorders.
Bleeding disorder defined— In this section, the term bleeding disorder means an inheritable disorder which—
involves an impairment in the blood’s ability to form a proper clot, including hemophilia, von Willebrand disease, and rare factor deficiencies; and
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
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.
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.
Requirements— The campaign under this section shall—
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;
utilize strategies to ensure individuals living in rural and underserved areas are reached;
include culturally and linguistically appropriate resources, as applicable; and
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.
Evaluation— The Secretary shall—
establish benchmarks and conduct qualitative assessments regarding the awareness campaign under this section; and
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.
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.