Background & Significance

The primary health issue affecting the VWD community is a lack equitable care and information about the disorder. Although VWD is the most common inherited bleeding disorder, it is estimated that 35,000 to 387,000 patients may have symptomatic, undiagnosed VWD in the U.S. (Sidonio, Zia, & Fallaiz, 2020). Furthermore, awareness of VWD is low among health care professionals (Sidonio, Zia, & Fallaiz, 2020). Unfortunately, delayed diagnosis and treatment of VWD can lead to severe complications and low quality of life for individuals with the disorder. Improving access to information on how to diagnose and treat the disorder is necessary to improve long term health outcomes. Improving access to this information can help patients to better manage their disease and advocate for themselves so that their health is protected. Improving access to information on standard treatment is important for family and friends of someone living with VWD. They need access to information so they can support the person with VWD and respond if they find themselves in a harmful situation. Furthermore, healthcare professionals need access to information regarding the diagnosis and treatment of VWD to properly treat and respond to patients with the disorder. Healthcare professionals who are not hematologists need awareness of the disorder so they can refer to providers who can care for these individuals. NHF support individuals living with VWD, their families, and healthcare professionals. Therefore, addressing the primary health issue of lack of access to equitable care and information will support the population NHF serves. Increasing awareness and available education on VWD, its symptoms, and recommended treatment would improve health outcomes for individuals with VWD.

The health-related needs that contribute to a lack of equitable care and information is low awareness of the disorder, limited awareness of the recommended diagnostic procedures and treatments, and equitable access to this information. There are also health equity issues within the VWD community that negatively affect health outcomes. This should be considered when addressing the needs of the population. Limited awareness of the disorder leads to under-diagnosis and misdiagnosis of the disorder. In some cases, this has resulted in young women having complete hysterectomies in their 20s or 30s because their OBGYN could not diagnose the cause of their heavy menstrual bleeding. This is a life altering procedure that could have been avoided with consulting a hematologist and receiving treatment for VWD. Awareness of the disorder needs to be increased so that the burden of care does not only fall on the person living with VWD but is shared by their health care providers. Furthermore, awareness needs to be improved on the recommended diagnostic procedures and treatments for VWD. The guidelines for diagnosis (James, et al., 2021) and the management (Connell, et al., 2021) of VWD were updated in 2021. These guidelines should be followed to achieve streamlined diagnosis and proper treatment for the disorder. The improvement of awareness of VWD and the recommended guidelines should be addressed so that regardless of where the care is being received, there is a standard of care and treatment for all individuals with VWD.

Additionally, it is important to apply a health equity lens to addressing these health-related needs. VWD affects men and equally, however, women with bleeding disorders have been underrecognized and underdiagnosed (Weyand & Paul, 2020). Due to the universal stigmatization of periods and a lack of comfort discussing the issue, fewer women are seeking care, leading to fewer health care providers addressing the issue, and ultimately fewer women receiving quality care (Weyand & Paul, 2020). Health equity expands farther than just gender and race. Therefore, it is important to consider other social determinants of health such as socioeconomic status and transportation when addressing the health-related needs of the VWD community. This health equity lens needs to be applied so that the increased awareness of VWD and increased awareness of diagnostic procedures and treatments can result in a decreased burden of disease on these individuals and their families.

The National Hemophilia Foundation (NHF) is a national non-profit that serves people with bleeding disorders and their families. Their mission states that NHF is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. The organization is based in New York, NY, and employees approximately 90 staff members, based in 28 different states. NHF currently offers educational programs for consumers living with blood disorders, families/caregivers, and providers. These programs provide detailed information on different bleeding disorders, including VWD. The education series provides general information about VWD and is aimed at correcting misconceptions and increasing knowledge about the disorder. Steps for Living is an NHF educational campaign that provides thorough information on VWD and living with the disease throughout different stages of life. Steps for Living educates on how to manage the disease at different ages and addresses how to address activities such as travel, exercise, and relationships while living with VWD (National Hemophilia Foundation, 2019). NHF also focuses on advocacy for persons with blood disorders and their needs. NHF currently provides advocacy for access to affordable, quality treatments, and healthcare. They provide information and support on federal and state programs that are available. Finally, NHF understands that a world without bleedings disorders begins with research. They have invested more than $20 million to advance knowledge of the treatment of bleeding disorders (National Hemophilia Foundation, 2021). Specific to health equity, there is a Division of Health Equity, Diversity, and Inclusion (HEDI). Additionally, NHF has established the Health Equity Working Group that makes recommendations to ensure NHF’s programs and services meet the needs of the diverse bleeding disorders community (National Hemophilia Foundation, 2022). HEDI is currently in the beginning stages of building an equity and empowerment action model. This model will be used by NHF to propel what the organization does in the next seven to ten years.