IV
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 bleed-
ing disorders as patients, carriers, and caregivers;
Whereas von Willebrand’s disease is the most common inher-
ited 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, post-
operative bleeding, and prolonged bleeding following
minor injury;
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Whereas population prevalence studies have suggested a prev-
alence in the United States of approximately 1 to 2 per-
cent 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 lab-
oratory 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 dis-
ease 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 (fac-
tor 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 stabi-
lizing factor (factor XIII);
Whereas the study of rare disorders often leads to break-
throughs in the understanding of more common dis-
orders;
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,
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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 care-
givers: 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 pre-
senting 
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 deter-
mined that 13 to 20 percent of these women meet
the criteria for diagnosis of mild von Willebrand’s
disease;
(3) hysterectomy for excessive menstrual bleed-
ing should not be performed without the consider-
ation of a bleeding disorder;
(4) referral of a woman with a bleeding dis-
order to a federally sponsored hemophilia treatment
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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 fa-
cilitate genotyping of the disorder, and patients
should be referred for genetic counseling when ap-
propriate;
(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 hemo-
philia 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
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against bleeding disorders in women by acting with
appropriate offices within the National Institutes of
Health to provide the Congress with a 5-year re-
search 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, treat-
ment, and prevention of the complications of wom-
en’s bleeding disorders.
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