H.Con.Res. 315 (eh) ...

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108th CONGRESS
  1st Session
H. CON. RES. 314

    Expressing the sense of Congress regarding women with bleeding 
                               disorders.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            October 29, 2003

   Mrs. McCarthy of New York (for herself, Ms. Norton, Ms. Carson of 
Indiana, Ms. Millender-McDonald, Ms. McCarthy of Missouri, Ms. Lee, and 
Mrs. Christensen) submitted the following concurrent resolution; which 
          was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                         CONCURRENT RESOLUTION


 
    Expressing the sense of Congress regarding women with bleeding 
                               disorders.

Whereas the lives of women are impacted by both congenital and inherited 
        bleeding disorders as patients, asymptomatic 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 studies estimate that 1 to 2 percent of women and girls in the United 
        States suffer from von Willebrand's disease;
Whereas studies estimate that 13 to 20 percent of women in the United States 
        diagnosed with menorrhagia suffer from von Willebrand's disease;
Whereas the majority of women in the United States who suffer from 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 
        when it is diagnosed properly;
Whereas failure to correctly diagnose von Willebrand's disease in women may lead 
        to unnecessary hysterectomies resulting in increased risk from bleeding 
        at the time of surgery;
Whereas some women suffer from rare bleeding disorders, such as hemophilia C;
Whereas the study of these rare bleeding disorders often leads to breakthroughs 
        in the understanding of more common disorders;
Whereas women are the carriers of the gene responsible for hemophilia;
Whereas individuals who are asymptomatic carriers of the gene for hemophilia 
        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 son with hemophilia; and
Whereas women are the primary caregivers and purchasers of health care in the 
        United States: Now, therefore, be it
    Resolved by the House of Representatives (the Senate concurring), 
That it is the sense of Congress that--
            (1) the Federal Government has a responsibility--
                    (A) to further the research that is needed to 
                identify a more accurate laboratory test for von 
                Willebrand's disease;
                    (B) to increase funding for basic biomedical and 
                psychosocial research on von Willebrand's disease, rare 
                blood disorders, and hemophilia; and
                    (C) to continue to improve access to treatment 
                centers for all individuals with bleeding disorders;
            (2) the Director of the National Institutes of Health 
        should take a leadership role in the fight against bleeding 
        disorders in women by acting through appropriate offices within 
        the National Institutes of Health to provide Congress with a 5-
        year research plan for women with bleeding disorders;
            (3) 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;
            (4) physicians should screen all adolescent females 
        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;
            (5) physicians should screen all women presenting with 
        menorrhagia for von Willebrand's disease;
            (6) hysterectomies for excessive menstrual bleeding should 
        not be performed without first considering whether the patient 
        may have a bleeding disorder;
            (7) 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;
            (8) physicians should conduct clotting factor analyses for 
        carrier diagnosis and to facilitate genotyping of the disorder, 
        and patients should be referred for genetic counseling when 
        appropriate; and
            (9) patient advocate organizations and medical specialty 
        societies should continue to collaborate on public education 
        campaigns to educate women about bleeding disorders.
                                 <all>

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