Youth Empowerment Initiative Tackles Sickle Cell Disease in Nigeria

In a significant effort to combat sickle cell disease (SCD) in Nigeria, the Aghogho Sickle Cell Care Foundation has launched Project Voices for Sickle Cell, a youth-led initiative aimed at raising awareness and equipping young advocates to educate the public on this inherited disorder. The project officially started in July 2024, with school advocacy activities commencing in September to coincide with Sickle Cell Awareness Month.

Supported by the Richard Coker Foundation, the initiative empowers young adults aged 18-35 across Nigeria with vital knowledge on sickle cell disease, enabling them to spread awareness in their communities. A total of over 50 advocates were trained in SCD basics, advocacy strategies, and project management. These young advocates have carried out advocacy projects in several states, including Oyo, Zamfara, Kano, Abuja, Katsina, Bauchi, Adamawa, Abia, Osun, and Benue. Their efforts are instrumental in promoting awareness, dispelling myths, and reducing stigma surrounding the disease.

Speaking on the initiative, Aghogho Akpoyovwaire, CEO of the Aghogho Sickle Cell Care Foundation, stressed the importance of education in reducing Nigeria’s high burden of sickle cell disease. “Nigeria has the highest burden of sickle cell globally, and Project Voices for Sickle Cell is helping raise a generation that understands the disease and its prevention. Our goal is to empower young people to become the voices in their communities, advocating for awareness and promoting better health outcomes,” she said.

The training sessions for Project Voices for Sickle Cell equipped participants with essential skills in sickle cell disease (SCD) basics, advocacy strategies, and project management. This comprehensive training was conducted by a team of experts, including Dr. Mojisola Cyril-Olutayo, a lecturer and sickle cell researcher from Obafemi Awolowo University. The advocates received specialized training in project management and student engagement, empowering them to effectively educate secondary school students about sickle cell disease and fostering awareness and understanding in their communities.

Data gathered from participating students revealed some concerning statistics: 43 percent of students had never been taught about sickle cell disease, and 47.4 percent did not know how SCD was inherited. However, the post-survey results from the project indicated a remarkable impact: there was an 80 percent increase in students’ understanding of sickle cell disease, 85.7 percent of participants felt confident enough to share what they learned, and an impressive 98.6 percent of students stated that the program changed how they think about making informed health and reproductive decisions.
One of the participants, Sanusi Mohammed, a young advocate from Zamfara State, shared his experience: “The project was very impactful. The school I reached out to really enjoyed the session, and it was both educational and enlightening. The students were engaged and eager to learn about sickle cell disease, and I feel that my contribution made a difference.”
This grassroots effort is having a wide-reaching effect across Nigeria, with advocates like Sanusi stepping up to educate and empower their local communities.

The success of Project Voices for Sickle Cell has underscored the importance of governmental involvement in supporting health initiatives aimed at reducing the burden of sickle cell disease. The foundation calls on both federal and state governments to partner with civil society organizations in spreading awareness about sickle cell disease, promoting genotype testing, and ensuring that proper healthcare facilities are available for those affected.

“A collective effort is needed to tackle sickle cell disease in Nigeria,” said Aghogho. “We urge the government to invest in awareness campaigns and healthcare infrastructure that can support sickle cell patients and their families. Together, we can reduce the prevalence of this disease and improve the quality of life for those affected.”

The coordination of Project Voices for Sickle Cell was expertly managed by Ademide Adeboye, the Project Manager of the Aghogho Sickle Cell Care Foundation. She expressed her enthusiasm for the project, stating, “Being part of Project Voices for Sickle Cell has been an incredibly rewarding experience. It’s inspiring to see young advocates stepping up to educate their communities about sickle cell disease. Together, we are making a difference, and I am proud to support this initiative in empowering the next generation.”

Her efforts in organizing the training sessions and overseeing project coordination played a crucial role in ensuring the smooth operation of the initiative.

As the project continues to expand, the foundation remains committed to building a sickle cell-free future through education and youth empowerment. With the support of partners like the Richard Coker Foundation and the continued dedication of young advocates, Project Voices for Sickle Cell is well on its way to creating lasting change in Nigeria’s fight against sickle cell disease.