Germaine Johnson Sr. was a dedicated and caring individual who in 2001 started the Sickle Cell Inner Circle Support Group which later became the Sickle Cell Support Services in 2004. The Sickle Cell Support Services’ themed message is “We Suffer. We Fight. We Win” and the organization’s mission is to enhance the well-being of sickle cell patients and their families in the State of Arkansas.
Mr. Johnson’s life story and work is a true testament to the organization’s theme and mission. Germaine was soft spoken, yet his voice and influence was particularly penetrating, effective and relevant in fighting for the well-being of sickle cell patients and their families throughout the State of Arkansas; and Germaine Johnson Sr. was known in Arkansas public health and policy arenas as “The Voice of Sickle Cell in Arkansas” and was the First Chairman of the Arkansas Legislative Taskforce on Sickle Cell Disease, a taskforce established by way of Act 1191 of 2009.
Mr. Johnson Sr. was one of the architects of the “Face Sickle Cell” Television Campaign in Arkansas that aired statewide in September 2010 (National Sickle Cell Awareness Month) through February 2011 (and in subsequent years) and educated thousands of grassroots citizens, elected officials, public health advocates and more on how sickle cell impacts people of all races. Sickle Cell Support Services served as an integral partner in receiving calls and navigating television viewers to resources, educational materials and services about sickle cell disease and trait. This awareness campaign laid a fertile foundation for better understanding by Arkansas decision-makers regarding the need for a patient-centered ‘medical home’ for sickle cell adult consumers in Arkansas, leading to the passage of Act 909 of 2011 which encouraged the creation of an adult sickle cell clinic at UAMS.
In 2013, UAMS, for the first time in Arkansas history, opened its doors to an adult sickle cell clinical program where the Johnsons (Germaine & LaKisha) have served as advisors to the UAMS leadership and Arkansas Legislative body in the clinics creation and operations. Mr. Johnson served as an active member of the Arkansas Minority Health Consortium and assisted the Arkansas Minority Health Commission with sickle cell disease/trait outreach and education through its grant programs. There is now a hush in our hearts as we come together to pay our respects to the memory of a loving husband, father and passionate public health advocate. His personal battle with sickle cell disease led to a public life and now legacy of advocating and fighting on behalf of sickle cell consumers all across the State of Arkansas.