Trained and certified community health workers (CHW) provide care and resource coordination services for individuals with sickle cell disease throughout the state. CHWs conduct a comprehensive intake process to identify needs and resources and provide patient education, support, and community resource access reflecting needs to improve health outcomes. CHWs link individuals who do not have a regular source of health care to SCD specialist and a medical home for primary care. Services include resource coordination; medical appointment support; and assistance accessing transportation, housing, utility assistance, and job training. CHWs provide education, support, and coordination for emerging and young adults (16-24) as they transition from pediatric to adult care to ensure a successful healthcare transition and assist with life planning.  

In partnership with Morehouse School of Medicine, SCFG offers a four-hour training on evidence-based protocols for the management and treatment of sickle cell disease. The training is also designed to increase understanding of the physiology of sickle cell disease and the perceptions and experiences of individuals living with sickle cell disease. Participants are provided with resources to build their understanding of sickle cell disease and eligible participants can earn continuing medical education credits. 

SCFG participates in community health fairs to increase awareness and dispel myths about sickle cell disease and sickle cell trait. In partnership with a variety of community organizations, SCFG provides food baskets, schools supplies, and toys to families in need or children with SCD hospitalized during the Christmas season. SCFG sponsors candlelight vigils to celebrate the lives of those who have succumbed to SCD. 

In partnership with Georgia’s Newborn Screening Program, SCFG provides notifications to parents whose newborn test results detect abnormal hemoglobin. Certified hemoglobinopathy counselors provide education and counseling to help parents understand the results and implications with an average of 500 parents annually. The counselors also provide education to medical providers to help them understand implications of the diagnosis. Counselors provide education and counseling and offer family testing to assist the family manage SCD. Post-test counseling services are provided for individuals who test with abnormal hemoglobin through our on-site or remote services to help them understand their results and the implications of those results, including athletes with a confirmed test for SC trait. 

SCFG offers an annual week-long, medically supervised camp for children and adolescents with SCD. SCFG partners with a variety of medical providers, medical institutions, and other organizations to provide a transition focused camp. Children and adolescents are afforded opportunities to manage limitations, develop coping skills, develop self-confidence, and self-worth while enjoying traditional summer camp activities. The camp utilizes young adults with SCD as counselors, camp leaders and role models. An active camp planning committee manages camp planning activities (yearly goals and objectives, schedule planning, volunteer counselor recruitment, logistics, etc.) and the camp is accredited by the American Camp Association.  

SCFG provides two educational series, “Ready. Set. Transition.” and “Free and Well” to help emerging and young adults with sickle cell disease live their best lives possible while managing a chronic condition. Ready. Set. Transition is offered to adolescents between ages 13 and 18 to help them prepare to transition from pediatric care into adult care and adulthood. Free and Well provides a variety of topics for young adults between ages 19 and 25 to help them live a healthy lifestyle and offering resources to better manage their disease. A transition specialist CHW provides support and patient education to emerging and young adults to generate and implement transition plans; help them connect with adult care providers; and make and carry out plans in their adult lives. SCFG collaborates with adult and pediatric care partners to develop a city-wide transition protocol to ensure optimum outcomes for emerging and young adults with sickle cell disease. 

SCFG partners with Federally Qualified Health Centers (FQHC) and other health facilities in areas of the state with limited access to specialty care for SCD. A contract hematologist travels to locations across the state to provide specialty care within the FQHC or health care center as a visiting specialist. CHWs help with appointments and record keeping and collaborates with the health center to facilitate medical home placement to access comprehensive, routine care. A mobile unit, “Health Hub” has been retrofitted as a mobile clinic and is used to provide specialty care in areas of the state with no access to a brick-and-mortar space. 

Health educators provide workshops tailored for children, adults, and health care providers in group and family centered settings on wellness, family planning, genetic counseling, SCD, and abnormal hemoglobin. Educational materials are developed and disseminated to schools, health care providers, and community resource centers. SCFG coordinates and facilitates an annual symposium bringing medical researchers, lawmakers, and healthcare professional together with patients and their families to share and discuss new treatments, staying healthy, nutrition, mental health, paying for health care, advocacy, and other topics. Social media (website (www.sicklecellga.org), Twitter, Facebook, YouTube, Snap chat, and Blog Talk Radio) to provide SCD education, raise awareness, and respond to patient concerns and questions.  

Under the auspices of CLIA, CAP and OSHA, SCFG operates a clinical hematological diagnostic laboratory for the purpose of diagnosing hemoglobinopathies (hemoglobin diseases). SCFG provides testing on-site and uses its mobile unit, Health Hub, to travel to community events, churches, and other locations throughout the state to provide testing and laboratory services as requested. SCFG partners with the American Red Cross to coordinate community blood drives. Though a partnership with LabCorp, SCFG expanded this service in 2016 to any location in the state where a LabCorp facility is located.

As a Georgia Department of Family and Children Services Community Partner, SCFG helps eligible individuals and families apply for one of the many Federal Assistance Programs – Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), Medicaid, Child Care Assistance Program (CAPS), and the Women and Infants Nutritional Program (WIC). SCFG team members provide education materials on how to purchase and prepare healthy foods and provide education and awareness on the availability of these assistance programs and how to apply.  

SCFG provides two educational series, “Ready. Set. Transition.” and “Free and Well” to help emerging and young adults with sickle cell disease live their best lives possible while managing a chronic condition. Ready. Set. Transition is offered to adolescents between ages 13 and 18 to help them prepare to transition from pediatric care into adult care and adulthood. Free and Well provides a variety of topics for young adults between ages 19 and 25 to help them live a healthy lifestyle and offering resources to better manage their disease. A transition specialist CHW provides support and patient education to emerging and young adults to generate and implement transition plans; help them connect with adult care providers; and make and carry out plans in their adult lives. SCFG collaborates with adult and pediatric care partners to develop a city-wide transition protocol to ensure optimum outcomes for emerging and young adults with sickle cell disease. 

SCFG monitors state and federal legislation affecting the SCD and health communities and educates individuals with SCD on the implications of legislation. We provide education for decision makers on the disease and the needs of those with abnormal hemoglobin, including legislative-related events such as Sickle Cell Day at the Capitol. SCFG provides individuals with SCD with information and guidance on patient advocacy and how to communicate with their lawmakers. We also assist in setting up appointments on Sickle Cell Day. In 2015, SCFG successfully advocated the inclusion of SCD as one of the diseases in Haleigh’s Hope Act. In 2016, SCFG advocated funded for HB184-Probate Court At-Risk, requiring information about SC be available in Magistrate Court offices for all persons who apply for a marriage license. SCFG was instrumental in helping to establish a Sickle Cell Treatment Center in the Atlanta and testing for sickle cell as part of Newborn Screening in Georgia.