Sickle cell disease (SCD) continues to be a significant public health problem in West Africa, where genetic susceptibility leads to some of the highest incidence rates in the world. Notwithstanding the progress in biomedical research and diagnostics, available evidence shows a disturbing decline in the implementation and utilization of sickle cell screening services within the region. The paper discusses key determinants that have led to the decrease, and highlights suboptimal public awareness, lack of healthcare resources, and deeply rooted traditional beliefs and cultural practices. It also emphasizes the interactions among these factors and their synergistic influences on public health results. Rather, a multifaceted approach using initiatives at the levels of education reform, health system strengthening, and community engagement are needed to revive and improve the role of early detection in the mitigation of SCD's impact.
Abstract:
Sickle cell disease (SCD) continues to be a significant public health problem in West Africa where genetic susceptibility leads to some of the highest incidence rates in the world. Notwithstanding the progress in biomedical research and diagnostics, available evidence shows a disturbing decline in the implementation and utilization of sickle cell screening services within the region. The paper discusses key determinants that have led to the decrease, and highlights suboptimal public awareness, lack of health care resources and deeply rooted traditional beliefs and cultural practices. It also emphasizes the interactions among these factors and their synergistic influences on public health results. Rather, a multifaceted approach using initiatives at the levels of education reform, health system strengthening, and community engagement are needed to revive and improve the role of early detection in the mitigation of SCD's impact.
Introduction:
Sickle cell disease (SCD) is an inherited blood disorder resulting from the production of defective hemoglobin S, that causes red blood cells to become sickle-shaped which can then obstruct blood flow and limit oxygen distribution. The condition results in chronic anemia, painful crises, organ damage and increased susceptibility to infections, and if untreated, life expectancy is greatly reduced (Piel et al., 2017). Worldwide, over 300,000 babies are born annually with SCD and most of them live in sub-Saharan Africa (WHO, 2023). In West Africa, particularly, enormous suffering has been experienced with some of the highest reported prevalence of countries including Nigeria, Ghana, and Sierra Leone.
In the past, early SCD diagnosis via newborn or premarital screening has been key to effective prevention of and management of plan of management has increased the survival of SCD patients (Ohene-Frempong et al., 2010). Yet in the last 10 years, health agencies have seen a steady decrease in the availability, access, and adoption of these programs. This reduction represents a significant challenge to public health goals of reducing childhood mortality and increasing life expectancy in persons with SCD.
Purpose Statement:
The aim of this work is to analyze in depth the factors and causes of disappearing of the Screening of sickle cell disease in West Africa, and to submit evidence-based solutions to meet these challenges.
Thesis statement:
The reduction in sickle cell screening in West Africa is largely influenced by a web of weak public awareness, resource-stressed health systems combined with recurrent traditional beliefs and culture, which requires a holistic public health approach.
Lack of Education Deficits in Public Awareness:
Public awareness of SCD is the most important obstacle to a successful management of the disease. A study in several West African Countries has shown widespread misapprehension about SCD. This is for example as evident in the study of Adewoyin (2024) which revealed that up to 45% of respondents in rural Nigeria considered SCD an infectious or spiritual disease opposed to being hereditary. This misinformation is what prevents people and families from accessing biomedical interventions.
Missed opportunities for earlier diagnosis:
Prenatal, neonatal, and premarital screening programs are very important for early detection. But the ignorance about their utility prevents their use. Boateng et al., for example, in a study involving Ghana, _DEFINED_14 found that. (2022) found that even among women attending antenatal clinics, fewer than 30% were offered or accepted the SCD screen. The incorporation of genetic counseling services within primary healthcare is limited and educational interventions have yet to become a routine part of school programs.
Analytical Insight:
Those implementing educational interventions need to go beyond dictating knowledge to active, participatory methods to confront negative myths towards employing preventive practices. Interventions leveraging storytelling, community-drama and training peers have successfully increased health literacy in other public-health determinants and can be adapted to SCD-related education. A sustainable way forward will be for national governments to give SCD a high priority in their overall health financing plans. The inclusion of sickle cell screening in Universal Health Coverage (UHC) packages under social health insurance schemes may guarantee a sustainable access without compromising already vulnerable patients. Investments in point-of-care diagnostics, such as rapid sickle cell solubility tests, can also improve screening performance in resource-limited settings.
Lack of Resources Health System Limitations
Many West African countries have chronically under-funded, under-developed and under-staffed health systems. Several rural clinics and district hospitals do not have the laboratory infrastructure to perform hemoglobin electrophoresis or other reliable diagnostic tests (Adewale et al., 2024). Screening programs, even in urban areas, are largely dependent on donor investment and are thereby susceptible to monetary shocks and program cessation.
Economic Barriers:
Yet even where the price of a simple sickle cell screening test is as low as $5–20 USD, even this is unaffordable for many people especially in communities where most live below the poverty level (World Bank, 2024). The large share of out-of-pocket health expenses it places on a family deters families from seeking preventive care prior to acquiring symptoms.
Spiritual/Superstitions:
Anomaly and Influence Old-world perspectives that diseases are punishments sent by the ancestors or caused by witchcraft, that one can still sometimes glean from diseases resulting from witchcraft or the attacks of the ancestral spirits in West Africa. Olumide (2023) documented that children with SCD in some Yoruba communities in Nigeria are referred to as “abiku,” translated as “born to die,” an epithet with fatalistic underpinnings that rebuff biomedical intervention in favor of traditional healing.
Social Stigma and Consequences:
An SCD can be accompanied by stigma and social exclusion. Persons found to be carriers and patients may be disadvantaged regarding prospects for marriage, employment, and social standing. This stigma is a deterrent to getting tested because of the risk of suffering status loss, if diagnosed positive.
Analytical Insight When developing culturally relevant interventions.
Religious leaders, traditional healers, and respected elders should be part of the solution, not part of the problem as obstacles to health. Success stories of HIV/AIDS efforts in Africa have shown that by enlisting community leaders as health advocates, we can change social norms and stigma.
Summary:
The multilayered drop in the level of screening of sickle cell disease in West Africa can be linked to inadequate educational issues, economic and resource restrictions, as well as traditional beliefs and culture. These are not independent factors, and the ways in which they interact create contexts in which biomedical responses are less trusted, less accessible, or less prioritized. Such reversal requires a comprehensive, culture-specific approach that connects historical norms to contemporary public health.
Conclusion:
These reductions in sickle cell screening programs in West Africa are a public health emergency with profound implications for morbidity, mortality, and health justice. The challenge can only be tackled through the shifting of intervention from local levels to systemic integrated reforms. On a larger scale, governments need to invest more on healthcare infrastructure and work force building, incorporate genetic education into public education curriculum, and partner with community leaders to undo stigma and misinformation. Overseas organizations should not have a focus on quick fixes, but rather enabling people to solve their own issues. These combined interventions will help West African nations to improve early detection, care of patients, and save the tragic toll of sickle cell disease on future generations.
References
Adewoyin, A. (2024). Perception and Awareness of Sickle Cell Disease in the Rural Community of Nigeria. Nigerian Journal of Hematology, 18(2), 112-126.
Adewale, T., Mensah, P., & Soglo, B. G. (2024). Health care Infrastructure and Genetic Screening in West Africa: Challenge and Opportunities. West African Medical Journal, 36(1), 45-61.
Boateng, D., Owusu, K., & Nartey, E. (2022). Antenatal Care and Sickle Cell Screening: A Further Unmet Need in Ghana. Ghana Medical Review, 29(3), 233–248.
Olumide, F. (2023). Cultural identity and stigma among individuals with sickle cell disease in Yoruba religion, Nigeria. African Studies Quarterly, 25(4)85-102.
Piel, F. B., Patil, A. P., Howes, R. E., Nyangiri, O. A., Gething, P. W., Dewi, M., & Hay, S. I. (2017). The global epidemiology of sickle hemoglobin in neonates: A contemporary geostatistical model-based map and population estimates. The Lancet, 381(9861), 142-151.)
World Bank. (2024). Health Care Cost and Poverty in Sub-Saharan Africa: Report. Washington, DC: The World Bank.
World Health Organization. (2023). Sickle Cell Disease: Moving from Awareness to Action to Reduce Child M ortality. Geneva: WHO Press.
Ohene-Frempong, K., Oduro, J., Tetteh, H., & Nkrumah, F. (2010). Newborn Screening in Ghana for Sickle Cell Disease. (2008) Pediatrics, 121(Supplement 2), S120-S128.
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- Sefakor Akosua Atadja (Author), Marian Bell (Author), 2025, The Fall in Uptake of Sickle Cell Screening in West Africa, Munich, GRIN Verlag, https://www.grin.com/document/1582522
