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Washington Days 2004 Position Paper

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The National Hemophilia Foundation urges your support as a co-sponsor of House Concurrent Resolution 314, introduced by Congresswoman McCarthy (D-NY), to raise awareness about women’s bleeding disorders.

Approximately one to two percent of all persons in the United States are affected by bleeding disorders. Von Willebrand disease (VWD) is the most common inherited bleeding disorder. Despite the fact that women are most affected by VWD, most of them, as well as their healthcare providers, have little knowledge about the disease. This leaves the majority of sufferers undiagnosed and without effective medical treatment. Women are at most risk for traumatic bleeding during childbirth, surgeries and even basic procedures like dental care. Other symptoms include bruising, nosebleeds and heavy menstrual cycles. Although there is currently no cure, effective treatment is available if the disorder is properly diagnosed.

The resolution calls for:

• Appropriate screening for women and girls with excessive menstrual bleeding prior to the initiation of treatment. As many as 20% of these women have von Willebrand disease.

• Evaluation prior to hysterectomy to rule out the possibility of a bleeding disorder. Severe bleeding is one of the leading reasons for hysterectomies among US women of childbearing age.

• Referrals of women with a bleeding disorder to a federally-sponsored hemophilia treatment center for comprehensive treatment.

• Strengthening of public education and outreach campaigns such as the Project Red Flag program conducted by the National Hemophilia Foundation and the Centers for Disease Control and Prevention.

• Increased funding for research to improve diagnostic testing and treatment.

Passage of H.Con.Res. 314 is a key step in ensuring that millions of women receive appropriate treatment for their bleeding disorder. The National Hemophilia Foundation and the bleeding disorders community urge your support. Please contact Caroline DeRosa in Congresswoman McCarthy’s office at 202/225-5516 to sign-on to the resolution.