In May 2023, in Atlanta, GA, a group of stakeholders gathered to discuss and provide solutions for women, girls, and people who had or have the potential to menstruate with bleeding disorders.

Presented at ASH in San Diego 2023. Dr. Danielle Nance of FTFW was an author. It argues for prophylaxis for women with ABRs of 2 or more.

From abstract: In 2004, 766 questionnaires were sent, and 546 women responded (80%). Of these, 274 were carriers of hemophilia A or B. The median clotting factor level of carriers was 0.60 IU/mL (range, 0.05-2.19 IU/mL) compared with 1.02 IU/mL (range, 0.45-3.28 IU/mL) in noncarriers. Clotting factor levels from 0.60 to 0.05 IU/mL were increasingly associated with prolonged bleeding from small wounds and prolonged bleeding after tooth extraction, tonsillectomy, and operations. Carriers of hemophilia bleed more than other women, especially after medical interventions. Our findings suggest that not only clotting factor levels at the extreme of the distribution, resembling mild hemophilia, but also mildly reduced clotting factor levels between 0.41 and 0.60 IU/mL are associated with bleeding. (Blood. 2006;108:52-56)

Abstract: The challenge of pregnancy can be significant to the point of being life-threatening in a woman with a bleeding disorder. Additionally there can be a risk to the fetus and the neonate. A hemostatic defect can affect the course of the pregnancy, but the impact is most feared around delivery in the immediate and the extended post partum period, requiring rapid identification and prompt referral to a hematologist for assistance in management. Identifying the type of congenital bleeding disorder and knowing its inheritance pattern is crucial during counseling prior to conception and in preparation for delivery. A comprehensive approach by a specialized and experienced team in a tertiary care center with access to adequate laboratory monitoring and therapies can facilitate the process. The multidisciplinary team should include a hematologist, an obstetrician, a pediatric hematologist, an anesthesiologist, and in select cases a clinical geneticist and a maternal fetal medicine specialist. In this review article, we will detail the diagnostic path and management of pregnancy and delivery in women with some inherited bleeding disorders, in particular those affected by hemophilia A (HA), hemophilia B (HB), and von Willebrand disease (VWD).