Integrating Sickle Cell Disease Care into Primary Health Care in the Democratic Republic of Congo: Lessons from a three-year Pilot project (2022-2024)

Background Sickle cell disease is one of the most frequent hereditary disorders in sub-Saharan Africa, however it is still not a high focus in public health activities. In Primary Health Care, it's crucial to detect problems early and work collaboratively to solve them in order to minimize the number of people who get sick and die. Methods From 2022 to 2024, SANRU Asbl undertook a trial project in three selected health zones in the Democratic Republic of Congo (Selembao in Kinshasa province, Diulu Kasai Oriental province, and Ibanda in Sud Kivu province) with support from the Pierre Fabre Foundation to integrate Sscke cell disease services into Primary health care. Interventions included creating national standards, screening pregnant women and newborns, using the Gazelle automate to validate laboratory results through electrophoresis, making it easier for people to get important medicines, improving blood collection systems, educating individuals in the community with the help of peer educators, and ongoing supervision. We collected the information from reports on community activities, lab records, and normal health records. Results In the pilot study, 30,665 pregnant women, 12,252 neonates, and 13,536 children with symptoms underwent electrophoretic profiling, which allowed the early diagnosis of Sickle cell disease. Community involvement increased awareness, reduced stigma, and enhanced the likelihood of individuals seeking care. The project helped build up a network of labs for confirmatory testing and made sure that medicines were on hand. Nonetheless, challenges persisted regarding the maintenance of a consistent supply, employee turnover, and the referencing system. Conclusion This pilot shows that integrating Sickle Cell disease services into Primary health care is possible and helpful. It makes it easier to get diagnosis and treatment, gets more people involved in the community, and teaches principles for expanding nationwide in the Democratic republic of Congo and places like it.