Last March, 45 advocates came to Sacramento to participate in Legislative Day at the State Capitol! In the morning, participants gathered in the Secretary of State Building’s meeting room to eat breakfast and to get to know the members of their teams. Many of the Team Leaders were HCC Advocacy & Access Ambassadors, a three-year-old program that promotes advocacy education for adults outside of the annual Legislative Day.
Often, team members were also family members- spouses, parents with their children or even grandparents and grandchildren!
During the morning breakfast, Future Leader teens met the adults in their groups and had the chance to prepare for their meetings with legislators. Much wise advice passed between seasoned advocates and our teens, and even a few lessons on the art of tying a tie.
After breakfast, Lynne Kinst presented a short advocacy training that especially focused on the bill HCC co-sponsored this year with the All Copays Count Coalition. AB 2180 by Assemblymember Akilah Weber, M.D. was aimed at banning copay accumulators and safeguarding patient assistance, and bleeding disorder community advocates had already been playing a large part in supporting the bill.
To anyone who signed a petition online or on a postcard in person, or if you placed a dot on our state map boards showing your support of AB 2180, thank you!! We could never do the advocacy work we do without you.
During the morning program, Lynne also had the honor to present the Council’s annual “Christopher J. Pitkin Advocate of the Year Award” to longtime HCC Board Member, current Secretary, and stellar volunteer and advocate, Stephanie Dansker.
Stephanie used her remarks to not only thank HCC but also to highlight another foundational member of the Hemophilia Council of California, Randall “Randy” Curtis, who was also in attendance for Legislative Day.
A rare, special award was also announced, a “Lifetime Achievement Award”, granted to Takeda for their legacy of support of the California bleeding disorders community.
Additionally, all of the 17 Future Leaders, an outstanding and large group of youth, were presented individually with their program certificates.
Throughout Legislative Day’s 49 legislative meetings, our 45 Future Leaders and other community members had impassioned conversations with California legislators and their staff as attendees shared their personal stories and underscored the importance of AB 2180. One of our advocates said,
“[Legislative Day] creates a sense of community in which we are comfortable sharing our stories.”
Sometimes legislative offices went the extra mile to make our advocates feel at home. At Assemblymember Stephanie Nguyen’s office, the staff welcomed our advocates by having a life-sized Easter Bunny hand out candy from under a balloon arch!
Legislative Day 2024 also had our first ever all-Spanish-speaking group of advocates doing Legislative visits. HCC partnered with HFSC to achieve this first. The group was led by Rigo Garcia, Executive Director of HFSC, and included Thalía and Pascual Santiago, and Heidi Agama Jimenez, who is also a Future Leader. According to Rigo Garcia:
“[This] signaled a significant step forward in inclusivity and accessibility. Having a Spanish-speaking group to communicate with our elected officials is invaluable. Community members can share their stories directly, ensuring nothing gets lost in translation. This direct interaction allows for the full power of their emotions to be conveyed, making their voices even more impactful. [. . .] As the Executive Director of the Hemophilia Foundation of Southern California, it was truly gratifying to witness and actively participate in this historic moment.”
The Spanish-speaking group was warmly welcomed by the legislative staff they met, many of whom were bilingual. The experience for our Spanish-speaking advocates can be summed up by one of the participants, Thalía Miranda Santiago.
According to Thalía,
“Fighting for a cause that matters is worth it, no matter what language or nationality. For me, I was impacted by everything they do and I love being part of a change.”
After all the meetings were done on Legislative Day, our teen Future Leaders had a unique opportunity. Senator Anthony Portantino graciously led them on a tour of both the Assembly and Senate floors.
Senator Portantino was first presented with the “Legislator of the Year Award” to recognize his dedication to public service and the bleeding disorders community over the years. In response to this honor, Senator Portantino stated,
“I am grateful to receive the Legislator of the Year Award from the Hemophilia Council of California. It’s important that we work towards improving the quality of life for those affected by hemophilia by ensuring access to care. The Hemophilia Council is doing great advocacy work on this issue, especially with their Future Leaders initiative. ”
Thank you to all our Legislative Day team leaders, Advocacy Ambassadors, Future Leaders, and volunteers for making this day possible!
We’re already getting excited for Legislative Day 2025!
