(Greenville, South Carolina) — On Thursday, August 16, and Friday, August 17, 2018, approximately 47 policy experts, government officials, medical professionals, and bleeding disorders advocates, met in Columbia, South Carolina, to address access to healthcare issues at a forum titled The South Carolina Challenge, coordinated by Hemophilia of South Carolina (HSC) and their Advocacy Coalition. On Thursday evening, the group assembled for dinner and an opening program, Why Healthcare Matters, which featured testimony by HSC community member Mr. Gene Wilson about living with severe hemophilia and an inhibitor, as well as an opening keynote address by Representative Leon Howard, chair of the Medical, Military, Public and Municipal Affairs Committee in the South Carolina House of Representatives, who shared a bit about his families personal experiences regarding challenges to accessing healthcare and roadblocks he sees within the healthcare system, as well as his vision of how government can work to ensure persons with chronic diseases can have better and more reliable access to healthcare.
On Friday morning, Ms. Sue Martin, executive director of HSC and Advocacy Coalition member, welcomed the group and facilitated introductions. Assisting in facilitating the forum was Mr. Jeremy Williams, HSC policy and advocacy assistant, who is also a member of the HSC Advocacy Coalition. The program then kicked off with testimony by Mr. Shawn Sperry, vice president of HSC’s board of directors and chair of its Advocacy Coalition, who is a ninth generation with severe hemophilia. Ms. Brendan Hayes, government relations specialist with the public policy team at the National Hemophilia Foundation (NHF), initiated the Bleeding Disorders 101: History of Bleeding Disorders; Our Past and Our Future portion of the program, which included a brief understanding of bleeding disorders, the evolution of clotting factor treatment, and other major medical developments relevant to hemophilia and similar disorders. This program also included testimony by HSC board members Ms. Cristal Day, who serves as vice chair of the HSC Advocacy Coalition, and Ms. Wendy Legrand, who is the current secretary of the Advocacy Coalition.