[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 380 Introduced in House (IH)]







107th CONGRESS
  2d Session
H. CON. RES. 380

  Expressing the sense of the Congress regarding women with bleeding 
                               disorders.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 17, 2002

 Ms. McKinney submitted the following concurrent resolution; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                         CONCURRENT RESOLUTION


 
  Expressing the sense of the Congress regarding women with bleeding 
                               disorders.

Whereas the lives of women are impacted by congenital bleeding disorders as 
        patients, carriers, and caregivers;
Whereas von Willebrand's disease is the most common inherited bleeding disorder;
Whereas von Willebrand's disease is characterized by menorrhagia (excessive 
        menstrual bleeding), frequent nosebleeds, recurrent bleeding from the 
        mouth and gums often resulting in periodontal disease, swollen and 
        painful joints, gastrointestinal bleeding, excessive bruising, 
        postoperative bleeding, and prolonged bleeding following minor injury;
Whereas population prevalence studies have suggested a prevalence in the United 
        States of approximately 1 to 2 percent of all women and girls and 13 to 
        20 percent of women diagnosed with menorrhagia;
Whereas the majority of women who suffer with von Willebrand's disease are 
        undiagnosed;
Whereas an accurate diagnosis of von Willebrand's disease is sometimes difficult 
        to obtain given current standard laboratory testing techniques;
Whereas effective medical treatments are available for von Willebrand's disease 
        if it is diagnosed properly;
Whereas failure to correctly diagnose von Willebrand's disease in women may lead 
        to unnecessary hysterectomies with resultant increased risk from 
        bleeding at the time of surgery;
Whereas some women suffer from rare bleeding disorders such as fibrinogen 
        (factor I) deficiency, prothrombin (factor II) deficiency, 
        parahemophilia (factor V deficiency), proconvertin or serum prothrombin 
        conversion accelerator deficiency (factor VII), Stuart-Prower factor 
        deficiency (factor X), Hemophilia C (factor XI deficiency), Hageman 
        factor deficiency (factor XII), and fibrin stabilizing factor (factor 
        XIII);
Whereas the study of rare disorders often leads to breakthroughs in the 
        understanding of more common disorders;
Whereas women are the carriers of the gene responsible for hemophilia;
Whereas obligate carriers of hemophilia may fall into one of three categories--
        the daughter of a man with hemophilia, the sister of one or more boys 
        with hemophilia, and the mother of a hemophiliac son;
Whereas some obligate carriers of hemophilia may also be symptomatic for the 
        disease;
Whereas women are the primary caregivers and purchasers of health care in the 
        United States; and
Whereas a diagnosis of hemophilia raises both physical and psychosocial 
        ramifications for carriers as well as caregivers: Now, therefore, be it
    Resolved by the House of Representatives (the Senate concurring), 
That it is the sense of the Congress that--
            (1) physicians should screen all adolescents presenting 
        with severe menorrhagia for von Willebrand's disease before the 
        initiation of hormone therapy in order to ensure that the 
        treatment does not mask the diagnosis;
            (2) physicians should screen all adult women presenting 
        with menorrhagia for von Willebrand's disease, as objectively 
        documented cases have determined that 13 to 20 percent of these 
        women meet the criteria for diagnosis of mild von Willebrand's 
        disease;
            (3) hysterectomy for excessive menstrual bleeding should 
        not be performed without the consideration of a bleeding 
        disorder;
            (4) referral of a woman with a bleeding disorder to a 
        federally sponsored hemophilia treatment center is critical to 
        comprehensive treatment of women with bleeding disorders;
            (5) physicians should be encouraged to conduct clotting 
        factor assays for carrier diagnosis and to facilitate 
        genotyping of the disorder, and patients should be referred for 
        genetic counseling when appropriate;
            (6) patient advocate organizations and medical specialty 
        societies should continue to collaborate on public education 
        campaigns to educate women about bleeding disorders;
            (7) the Federal Government has a responsibility to--
                    (A) further the research that is needed to identify 
                a more accurate laboratory test for von Willebrand's 
                disease;
                    (B) increase funding for basic biomedical research 
                and psychosocial research in von Willebrand's disease, 
                rare factor deficiencies, and hemophilia; and
                    (C) continue to improve access to hemophilia 
                treatment centers for all individuals with bleeding 
                disorders;
            (8) the Director of the National Institutes of Health 
        should take a leadership role in the fight against bleeding 
        disorders in women by acting with appropriate offices within 
        the National Institutes of Health to provide the Congress with 
        a 5-year research plan for women with bleeding disorders; and
            (9) the Director of the Centers for Disease Control and 
        Prevention should continue the critical role of the Centers in 
        improving outreach, treatment, and prevention of the 
        complications of women's bleeding disorders.
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