Historic Milestone: The Coalition for Hemophilia B Supports Inaugural Congressional Briefing on Women with Bleeding Disorders

by James Romano

The Coalition for Hemophilia B (CHB) was honored to support the first-ever congressional briefing on Women with Bleeding Disorders. CHB has also supported the advocacy coalition FAIR Time for Women, whose mission is to build a grassroots movement to advance equitable access to diagnosis, care, and treatment for women, girls, and those assigned female at birth with bleeding disorders such as Hemophilia, Von Willebrand’s Disease, Platelet Storage Pool Disorder, Glanzmann’s Thrombosthenia, and others. 

FAIR Time for Women worked with Congresswoman Abigail Spanberger (D-VA) to host this Congressional briefing.  The Coalition for Hemophilia B shared women’s stories with FAIR Time, which were provided to Congressional Staff.  FAIR Time Director Ashley Gregory was the Master of Ceremonies for the event, first sharing her personal story and discussing the community's needs—specifically that in other disorders, women and men are treated more equitably.  Dr. Danielle Nance, a hematologist and bleeding disorders patient, spoke about the state of care for women in the United States. As you may know, CHB honored Dr. Nance at our Gala this past August. 

After hearing from Dr. Nance, several patients shared their stories and experiences of living with a bleeding disorder.  Ms. Kristin Shelton spoke passionately about trying to obtain a diagnosis for herself and her daughters at several different hemophilia treatment centers.  Ms. Candace Markum shared her story of doctors not being able to diagnose her bleeding disorder, which eventually led to a hysterectomy. These situations are still occurring after over 20 years of discussions and awareness. Approximately 30 Congressional staff listened to the powerful messages provided by the speakers on the need for equitable care for women. 

Finally, FAIR Time shared its legislative agenda with the congressional staff, including increased funding for Hemophilia Treatment Centers (HTCs) so these institutions can expand their capacity to see women and girls who bleed. The Coalition for Hemophilia B was thrilled that FAIR Time for Women organized this Congressional Briefing and called attention to this important population in the bleeding disorders community.