Managing a bleeding disorder can be hard for anyone, but women face unique challenges, from getting a diagnosis to receiving treatment. To change that, the National Hemophilia Foundation (NHF) and providers across the country are raising awareness and working to improve the medical care offered to women.
“One way we can provide support for these women is through educational programs for them and their providers,” says Kate Nammacher, MPH, NHF’s director of education. “We also have active advisory groups working on solutions for broader systemic changes in the care and support of women with bleeding symptoms.” Groups include the Victory for Women Working Group and the Centers for Disease Control and Prevention’s Women with Bleeding Disorders Working Group (CDC WWBD). Both are made up of consumers and healthcare providers.
The Hurdles
The first step to improving care is recognizing the issues girls and women with bleeding disorders face. “The bleeding symptom that contributes the most to poor quality of life is heavy menstrual bleeding, called menorrhagia,” says Robert F. Sidonio Jr., MD, MSc, associate director of hemostasis and thrombosis at Emory University/Children’s Healthcare of Atlanta. Adolescent girls and young women may miss school or work due to heavy periods, adds Sidonio. He is a member of the CDC WWBD.
Women face several obstacles to getting a bleeding disorder diagnosis. One of the first is that they may not recognize the problem. Chris Guelcher, MS, APRN, PPCNP-BC, a member of the CDC WWBD and a pediatric nurse practitioner, says family history may keep women from seeking medical care. “Family members may have similar bleeding issues, so symptoms aren’t recognized as abnormal.”
When they do seek help, women may discover that bleeding disorders can be difficult to diagnose, even with testing. For example, anxiety in a patient can cause a falsely high factor level during testing for von Willebrand disease (VWD), notes Guelcher. She works at the Center for Cancer and Blood Disorders at Children’s National Health System in Washington, DC. Because of this, it may take repeated testing to reach a conclusive diagnosis. But without an accurate diagnosis, it’s hard for healthcare providers to tailor their treatment approach, or for patients’ insurance to cover them.
Women may also encounter healthcare providers who view hemophilia as a male-only disorder. In addition, some healthcare providers may not understand or recognize unique bleeding issues in women.
A 2004 CDC survey of women with VWD found an average of 16 years between the onset of bleeding symptoms and diagnosis of a bleeding disorder. A 2015 needs assessment survey by NHF and its working group showed that the average gap was about 8 years.
Any delay in diagnosis can have serious health consequences for women. These include problems during pregnancy and childbirth, surgeries and joint issues due to microbleeds (bleeding from microscopic injuries in the joint).
Women may also face insurance hurdles to receiving treatment for a bleeding disorder. Without an accurate diagnosis, it can be hard for women to get appropriate insurance coverage for treatments. For instance, if an insurance company doesn’t have a diagnosis on file for VWD or mild hemophilia, it may not cover drugs that a doctor prescribes to help—even if a patient has symptoms. In addition, some providers who treat women with bleeding disorders may be considered “out of network” for some patients. This makes access difficult and expensive.
The Clinics
Earlier recognition, diagnosis and care can result in better health outcomes for female patients and even family members. “Sometimes we will diagnose a child, and then recommend evaluation of an adult for a possible bleeding disorder,” says Guelcher.
At Guelcher’s center, the thrombosis and hemostasis program coordinates with the menorrhagia clinic. There, a hematologist and gynecologist participate in the twice-monthly clinic for girls and women up to age 21.
Sidonio’s clinic also offers OB/GYN services that focus on managing heavy menstrual bleeding and pregnancy planning for all ages. This work is partially funded by an NHF Capacity Building Grant, which helps HTCs better fulfill their commitment to patients and collaborate with local chapters. Sidonio applied for the grant to create a women’s bleeding disorders clinic with a wider range of services.
The Kansas City Regional HTC at Children’s Mercy Hospital Kansas City holds a quarterly clinic where young women see a hematologist and a gynecologist. “The benefit for patients is the clinic is comprehensive: It helps with communication between these two disciplines,” says Melissa Armanees, RN, MSN, CPNP, a pediatric nurse practitioner at the center. With early education, women can better prepare for future health concerns.
The Online Community
When HemAware went to press, NHF anticipated unveiling a refreshed Victory for Women website in April or May. This site will provide a place where women in the bleeding disorders community can connect. NHF surveys and discussions with women guided content. “Women can feel alone in what they are going through,” says Corinne Koenig, MA, NHF manager of education and training. To remedy that, the site lets visitors share stories, art and podcasts, and access educational materials.
“NHF creates resources and workshops so that local chapters can better provide for women with bleeding disorders,” says Koenig. “Everyone’s voice matters.”