The Sickle Gene Action Foundation (SGAF), a newly established advocacy group, has been launched in Accra, focusing on addressing the challenges faced by individuals living with Sickle Cell Disease (SCD) in Ghana. The foundation aims to elevate SCD issues to receive the same level of attention as critical and communicable diseases through legislative change and improved access to treatments.
During the launch event, attended by government officials, healthcare professionals, and community members, Victoria Awo Twumasi, the founder and Executive Director of SGAF, outlined the foundation’s mission to collaborate with the Ghanaian government and stakeholders in enhancing the treatment and management of SCD.
SGAF’s inspiration stems from the late Professor Kwaku Ohene Frempong, a world-renowned hematologist and former President of the Sickle Cell Foundation of Ghana. Twumasi highlighted the foundation’s commitment to continuing Frempong’s legacy, emphasizing the importance of early diagnosis, affordable treatment, and public health awareness for managing SCD.
According to a report by the Daily Graphic, the foundation advocates for making SCD medications like hydroxyurea as widely accessible as HIV/AIDS medications. Dr Yvonne Brew, a pediatrician from the Greater Accra Regional Hospital, stressed the need for newborn screening for SCD, a critical step in early intervention and treatment.
The National Nurse Coordinator for Newborn Screening, Mary Lamptey, provided insight into the process and history of newborn screening for SCD in Ghana, which began in 1992 under Professor Ohene-Frempong’s guidance. Despite its success, the program requires further expansion and funding to become a national intervention.
SGAF calls for collective action to drive national awareness and strengthen civil society’s role in advocating for SCD care. The foundation’s launch marks a significant step towards improving the lives of those affected by Sickle Cell Disease in Ghana.
