Access to comprehensive, coordinated care is essential for individuals living with bleeding disorders. From accurate diagnosis and specialized treatment to mental health support and care coordination, the comprehensive care model of the Hemophilia Treatment Center Network is proven to improve outcomes and quality of life.

According to the National Bleeding Disorder Foundation’s Medical and Scientific Advisory Committee (MASAC), “Comprehensive or integrated care treats the whole person and the family, through continuous supervision of all the medical and psychosocial aspects of bleeding disorders. Comprehensive care is total care because every facet of the person is addressed, including their physical, emotional, psychological, educational, financial and vocational factors. The development of comprehensive care over the past 30 years has greatly improved the quality of life for people with bleeding disorders, helping them to be more independent and productive.”

Despite progress, many patients still face barriers—whether due to geography, insurance coverage, or limited access to specialized providers. Understanding these challenges is critical to ensuring that care systems evolve to meet real patient needs. We know that both Medi-Cal Managed Care and Kaiser, in particular, can create barriers that prevent patients from receiving the comprehensive care they deserve.

To better support our community, we’re asking patients and caregivers to share their experiences. Your input will help guide our efforts to improve access, strengthen care networks, and advocate for policies that support comprehensive treatment. Your story can help you and others access the care you need. Please take a few minutes to complete our short survey. Please only complete the survey once per patient in your family unless you have a new access issue to report. Your voice plays an important role in shaping the future of bleeding disorder care.