FED UP with Bleeding Disorders Act of 2026

(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.