By Dare Akogun
As the Nigerian Senate deliberates on a proposed national bill to address the management of Sickle Cell Disease (SCD) for the third time, a new study by Nguvu Change Leaders has underscored critical gaps in state laws concerning Sickle Cell Disease.
The comparative analysis, launched in September during Sickle Cell Awareness Month, examined existing laws in four Nigerian states and emphasized the urgent need for a unified national framework.
The report, titled “A Comparative Study of Existing Sickle Cell Laws in Four Nigerian States”, covers Anambra, Kano, Kaduna, and Abia states.
It reveals significant disparities in public awareness of Sickle Cell Disease and the effectiveness of existing state laws, particularly in the areas of premarital genotype screening and public health education.
While Anambra State has benefited from strong advocacy efforts, resulting in higher public awareness, states like Kano, Kaduna, and Abia lag behind, with low levels of public awareness and inconsistent implementation of the laws.
Speaking on the findings, Nguvu Change Leader Onor Obassi-Tawo noted, “This report comes at a crucial moment, coinciding with national discussions on creating a unified framework for SCD management. Our findings highlight the urgent need to address gaps in order to improve outcomes for SCD patients across Nigeria.”
Key Findings
The study identifies several critical challenges:
Severe Lack of Awareness: Kaduna State respondents displayed a striking lack of knowledge regarding the mandatory premarital screening law, while Anambra State fared better, thanks to ongoing advocacy efforts.
Inconsistent Implementation: Despite the existence of premarital screening laws, their enforcement is uneven across the states. The absence of a standardized legal framework creates disparities in enforcement and interpretation.
Limited Access to Genotype Screening: Many rural areas struggle with the availability and affordability of genotype screening services, which are essential for early detection of SCD.
Socio-Cultural Barriers: Deep-rooted cultural and religious beliefs continue to hinder the acceptance of premarital screening and promote traditional practices over medical advice. Stigma against individuals living with SCD also remains prevalent.
The report recommends enhancing public awareness, engaging religious and cultural leaders, and ensuring universal healthcare access for SCD patients.
The study, which involved interviews with healthcare practitioners, SCD advocates, patients, and religious leaders, aims to inform the development of a national bill that would standardize SCD management across Nigeria.
“Nguvu Change Leader’s analysis is a crucial step in informing the proposed National Bill and exposing the gaps in prevention, control, and management of SCD,” said Durga Nandini, co-founder of Nguvu Collective.
The proposed national framework could provide a balanced template for states to follow, ensuring both public health and individual freedoms are protected as Nigeria continues to battle the global burden of Sickle Cell Disease.
