Last weekend, HCC attended the 7th annual “Familia de Sangre”. This Spanish-language conference was organized by the four California hemophilia foundations. At the Exhibit Hall, we met families in person. Spanish-speaking booth volunteers Andrea Palladino and HCC Board Member Rigo Manzo were joined by Executive Director Lynne Kinst. We told families about our Spanish language programming. We also highlighted how we can help patients who have trouble accessing their care. New this year, we had information about copay accumulators. Attendees signed HCC petition cards to protect patient assistance in California. We also asked attendees to place a dot where they lived on a large map to show support for patient assistance.
During the teen program, several Future Leader alumni spoke. These speakers included Ivan Giron,Jr., Naomi Giron, and Heidi Agama Jimenez. These Future Leader alumni used their public speaking skills developed during the program. They spoke about how the Future Leaders program helped them become better advocates. They then encouraged the 70 other teens there to apply for next year’s program. Lynne Kinst and Rigo Manzo were also able to answer questions.
At 2:30 PM on Saturday, HCC presented our session “Your Bleeding Disorder Story and How HCC Can Help You Advocate for Yourself”. Our presenter was Estela Mata-Carcamo, President and Healthcare Advocate at “Looms for Lupus”. Her clear, colorful slides and engaging speaking style got the crowd involved. More than 50 attendees there practiced telling their own stories. At the end of the session, two different people shared with the group.
Additionally, Estela explained the copay accumulator issue in easy to understand terms. At the end of the session, many attendees turned in petition cards or added their dots to the map of California. HCC Board Member Rigo Manzo was also able to engage with the audience at the end of the presentation, as well. He asked the group a few quick questions- What topics did they prefer for future sessions? Would anyone in the audience like HCC to follow up on an access issue?
The attendees really loved our first HCC session at Familia de Sangre. We plan to continue providing similar sessions at future Familia de Sangre conferences!