Making Progress for Women with Bleeding Disorders

NHF Session Highlights Issues and Shares Resources for Women with Bleeding Disorders

NHF 2016 (Orlando, July 21-23): A session focused on research to better understand the treatment and care of women with bleeding disorders was held at the 2016 National Hemophilia Foundation’s Annual meeting.  It was shared that among 140 hemophilia treatment centers (HTCs), only 25 (18%) HTCs in the United States have a designated day for a women’s clinic. Diagnosis and appropriate treatment for women with bleeding disorders is often delayed. Abnormal uterine bleeding is the most complaint with adolescents, and it is estimated that 10-48% of adolescents have heavy menstrual bleeding.

The American Thrombosis and Hemostasis (ATHN) registry includes data for 7625 women, and that makes up greater than 25% of all patients entered in the registry.  The median age at diagnosis of a bleeding disorder was 13 years and, as expected, Von Willebrand disease (vWD) is the most common bleeding disorder in the dataset. Hemophilia A accounted for 7.8% of patients and hemophilia B accounted for 2.8% of patients. Of these women in the registry, 8.9% of reported joint bleeding and 10.7% reported reproductive track bleeding.

Within this dataset, there were 73 hemophilia carriers, and 44% of them reported more than four bleeding symptoms. Heavy menstrual bleeding and joint bleeding were among reported bleeding symptoms. Data also showed that 3.1% of women received recombinant factor replacement and 18.6% received plasma –derived factor for treatment of bleeding episodes.