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 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;
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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,
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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 caregivers: Now, therefore, be it

1 Resolved by the House of Representatives (the Senate

2 concurring), That it is the sense of the Congress that—

3 (1) physicians should screen all adolescents pre4 senting with severe menorrhagia for von

5 Willebrand’s disease before the initiation of hormone

6 therapy in order to ensure that the treatment does

7 not mask the diagnosis;

8 (2) physicians should screen all adult women

9 presenting with menorrhagia for von Willebrand’s

10 disease, as objectively documented cases have deter11 mined that 13 to 20 percent of these women meet

12 the criteria for diagnosis of mild von Willebrand’s

13 disease;

14 (3) hysterectomy for excessive menstrual bleed15 ing should not be performed without the consider16 ation of a bleeding disorder;

17 (4) referral of a woman with a bleeding dis18 order to a federally sponsored hemophilia treatment
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1 center is critical to comprehensive treatment of

2 women with bleeding disorders;

3 (5) physicians should be encouraged to conduct

4 clotting factor assays for carrier diagnosis and to fa5 cilitate genotyping of the disorder, and patients

6 should be referred for genetic counseling when ap7 propriate;

8 (6) patient advocate organizations and medical

9 specialty societies should continue to collaborate on

10 public education campaigns to educate women about

11 bleeding disorders;

12 (7) the Federal Government has a responsibility

13 to—

14 (A) further the research that is needed to

15 identify a more accurate laboratory test for von

16 Willebrand’s disease;

17 (B) increase funding for basic biomedical

18 research and psychosocial research in von

19 Willebrand’s disease, rare factor deficiencies,

20 and hemophilia; and

21 (C) continue to improve access to hemo22 philia treatment centers for all individuals with

23 bleeding disorders;

24 (8) the Director of the National Institutes of

25 Health should take a leadership role in the fight
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1 against bleeding disorders in women by acting with

2 appropriate offices within the National Institutes of

3 Health to provide the Congress with a 5-year re4 search plan for women with bleeding disorders; and

5 (9) the Director of the Centers for Disease

6 Control and Prevention should continue the critical

7 role of the Centers in improving outreach, treat8 ment, and prevention of the complications of wom9 en’s bleeding disorders.

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