by Sean Pentz

This year marked my 10th time attending the Hemophilia Council of California’s Annual Legislative Day in Sacramento—a tradition that continues to inspire and energize me. The day began with a warm welcome, breakfast, and a comprehensive briefing session where we learned about the key issues we’d be discussing with lawmakers. We were grouped regionally with fellow community members, including at least one “Future Leader”—a young advocate aged 14–18 who is either living with a bleeding disorder or directly impacted by one. These students represent the next generation of advocacy, and their voices are already making a difference.

 

In my group, I had the honor of working alongside Heidi Scanlan, a dedicated patient and longtime community advocate; Shelley Jejeh, a passionate caregiver and mother to a son with hemophilia; and our Future Leader, Bella Li. Bella is the daughter of a person with hemophilia and is already emerging as a powerful young advocate in our community. Together, we brought a range of perspectives and experiences to the table.

Throughout the day, we met with representatives from eight different California legislative offices. In each meeting, we shared our personal stories about living with or caring for someone with a bleeding disorder. Our main focus this year was Assembly Bill 278, which would establish a Patient Advocate Advisory Committee within the Office of Health Care Affordability. This bill is critical because it ensures that the patient voice is heard when decisions are made about cost-cutting measures that could disproportionately impact those with rare and chronic conditions.

The impact of our meetings was profound—particularly thanks to Bella, who spoke with remarkable poise and insight about the realities of growing up in a family affected by hemophilia. Her voice carried the message of resilience and hope, and she left a lasting impression not just on our group, but on the legislators we met.

Future Leader Bella Li

Legislative Day is more than a day of advocacy; it is a powerful reminder of the Hemophilia Council of California’s mission: to amplify the patient voice and ensure equitable access to high-quality, affordable care for all Californians living with bleeding disorders. I’m proud to be part of this ongoing effort and hopeful that our collective voices will help shape a future where patients are not only heard, but prioritized.