My journey as an advocate for hemophilia is deeply personal—rooted in love, loss, and an unyielding hope for the future. My husband, Howard, was one of four male members of the King family living with hemophilia. Growing up in Texas, his treatment options were limited to plasma transfusions, which were often inaccessible and carried significant risks. However, in the late 1970s, our decision to move to California was life-changing for Howard and ultimately, for our family.
Howard was referred to the University of California Davis Medical Center (UCDMC), which at the time was a beacon of hope for individuals with bleeding disorders. The center’s state-of-the-art research, innovative treatments, and compassionate medical staff gave Howard access to the care he desperately needed. This not only improved his quality of life but also extended it, allowing us to share many beautiful years together.
Howard passed away in 2016, but his legacy of resilience continues to inspire me. Today, my grandson carries the same diagnosis, which has reignited my passion for advocacy. I am proud to be involved with the Hemophilia Council of California (HCC), an organization that is making a profound difference in the lives of individuals and families affected by hemophilia and other bleeding disorders.
A Weekend of Advocacy and Community
Last October, I had the honor of attending two significant events hosted by the HCC. These gatherings not only reaffirmed my commitment to the cause but also highlighted the incredible work being done by advocates, healthcare professionals, and legislators.
October 6, 2024: A Celebration of Advocacy
The Fall Advocacy Days Training Dinner took place in a lovely Bay Area restaurant, where families, friends, and advocates gathered to celebrate the HCC’s contributions. It was heartwarming to hear participants share their personal stories about how the organization has positively impacted their lives.
Many spoke about the advancements in treatment modalities that have given them the opportunity to live fuller, more productive lives. We watched a compelling video that detailed the efficacy of a new medication for hemophilia, underscoring how far treatment has come since Howard’s early years. The evening was a testament to the power of advocacy and the importance of community support.
October 7, 2024: Advocating at the District Offices
The second event brought us to the district office of California State Senator Steve Glazer. Although the senator was unable to attend due to a special session, my daughter, Tiffany King-Hargraves, and I, along with Ashley Gregory of HFNC, met with his representative.
Our meeting was focused and productive. We shared our hopes for continued support and funding for the HCC, emphasizing the critical role the organization plays in advocating for individuals with bleeding disorders. The senator’s representative listened attentively, and we left feeling hopeful that our voices would be heard in the upcoming legislative session.
Looking Ahead
My advocacy journey is deeply tied to my family’s story, but it’s also part of a larger mission to ensure that no one living with hemophilia feels alone or underserved. Organizations like the HCC are vital in pushing for policies, funding, and research that improve lives.
As I reflect on Howard’s legacy and my grandson’s future, I am filled with gratitude for the progress we’ve made and determination for the work that lies ahead. Advocacy is not just about speaking up—it’s about creating a world where everyone, regardless of their health challenges, has the opportunity to thrive.
To those who are affected by hemophilia, whether directly or indirectly, know that you are part of a strong, resilient community. Together, we can continue to advocate for better treatments, greater awareness, and a brighter future for all.
