West African sickle cell disease advocacy

In Ghana, the Focus on Sickle Cell Foundation (FoSCel) launched a campaign for Sickle Cell Awareness Month in September. The initiative encourages citizens to prioritize genotype testing before marriage to prevent medical and emotional complications. The foundation also highlighted the social challenges of the disease, such as financial strain and discrimination, calling for greater inclusion from religious and educational institutions.

Building on these efforts, Amos Andoh, founder of the FUSO Foundation, is now advocating for the formal inclusion of sickle cell disease education within Ghana’s national curriculum. The foundation has submitted educational materials to the National Council for Curriculum and Assessment (NaCCA) to support this goal. Andoh emphasized that curriculum updates should address medical complications, genotype compatibility, and social stigma, enabling young people to make informed decisions regarding relationships before adulthood. To combat misinformation and stereotyping, the foundation has developed comic-based educational materials using visual illustrations for youth accessibility. These proposals have also been presented to the Ministry of Education, the Ghana Education Service, and the Parliamentary Select Committee on Education.

In Nigeria, medical advocates and stakeholders are calling for the federal government to provide free genotype testing in public health facilities. During a book launch by survivor Adeshetu Odiba, advocates noted that sickle cell disease lacks the policy attention and funding granted to diseases like HIV or malaria. Proposals to address the burden include expanding hematology departments, improving blood banks, and integrating sickle cell education into the national school curriculum.