Historically, hemophilia has been viewed as a disease that affects men and boys, which has led to significant gender bias against women with the disease in research, diagnosis, and treatment. As a result, there’s a lack of awareness and understanding of how hemophilia affects women and girls, leading to cases of delayed diagnosis, misdiagnosis, and inadequate treatment.

It’s essential that we recognize and address this gender bias with hemophilia and other bleeding disorders to ensure that all patients receive appropriate care and support.

Delays in diagnosis

Von Willebrand disease (VWD) is a bleeding disorder that can affect all people, be they male or female. A frustrated mother whose family history includes VWD wrote on Facebook that her daughter was born at a hospital that wouldn’t test her for the condition because she was a girl. She had a major bleed at 4 months old. Her son, on the other hand, was tested before birth, she said; he was found positive and received treatment.

Women with bleeding disorders typically experience a delay of 16 years from symptom onset to diagnosis, according to Dr. Amber Federizo on a recent Octapharma webinar titled “Women and Bleeding Disorders: Telling Our Story Our Way.” She also pointed out that women with von Willebrand disease continue to have heavy menstrual bleeding two years after diagnosis.

This is unacceptable.

Dr. Federizo’s comments brought me back to the ’80s and my feeling of not being worthy of my hematologist’s time. I’ve frequently been made to feel that men had it worse and that my problems with von Willebrand and hemophilia type B were minor in comparison. There’s a feeling within the bleeding disorder community that women aren’t affected as severely as most men, leading them to feel their experiences are minimized. This thinking ignores the fact that women of menstruating age bleed every month.

Women with bleeding disorders have been subjected to inconsistent wording, further exacerbating the problem. Since age 10, for example, I’ve been labeled a “carrier,” “symptomatic carrier,” “very symptomatic carrier,” “factor IX deficient,” “mild hemophiliac,” or “moderate hemophiliac.” Men and boys generally don’t face this problem.

Inadequate treatment

My symptoms of anemia and heavy menstrual bleeding were often brushed off, even though I’d been diagnosed with multiple bleeding disorders and was frequently anemic. My gynecologist would say my problems were hematology-related, and my hematologist would say the problem was gynecological. It wasn’t until a near-death experience that the two spoke on the phone, and some progress was made.

I turned 30 in 1995, when the medical community still had little to offer women with bleeding disorders. I endured multiple dilation and curettage procedures. I tried birth control pills, which helped for a few years. My hematologist prescribed DDAVP (desmopressin acetate) infusions and Stimate (desmopressin acetate nasal spray), but neither form of the medication helped. I gave up my fertility in my 30s after being told my bleeding would be too excessive to survive a pregnancy.

We must remember that women frequently have life-threatening bleeding, even though they are “mild” or “just a carrier.” Treatment is often more difficult for a mild hemophilia or carrier to obtain because it’s saved for hard-to-control bleeding episodes. Moderate or severe hemophilia is often treated regularly and prophylactically to prevent bleeding.

The first step to correcting this gender bias is to acknowledge it exists. We’ve made progress, but we have a long way to go.