As the Nigerian Senate deliberates for the third time on the proposed National Bill to manage Sickle Cell Disease (SCD), advocates have released a groundbreaking comparative study emphasizing the urgent need for a national legal framework.
Conducted by Nguvu Change Leader Onor-obassi Tawo and the Nigerian Nguvu Collective during Sickle Cell Awareness Month, the study, titled “A Comparative Study of Existing Sickle Cell Laws in Four Nigerian States,” highlights critical gaps in premarital genotype testing laws and raises awareness about SCD in the states examined.
Covering Anambra, Kano, Kaduna, and Abia, the study reveals significant disparities in public awareness and the effectiveness of state laws. While Anambra has benefitted from active advocacy, resulting in a more informed populace, Kano, Kaduna, and Abia experience alarmingly low levels of awareness.
“This report is timely, coinciding with national discussions on establishing a unified framework for SCD management,” says Onor-obassi Tawo. “Our findings underscore the urgent need to address these gaps to improve outcomes for SCD patients across Nigeria.” Despite commendable federal initiatives like newborn screening and sickle cell centers, substantial investment and concerted effort are necessary to tackle the burden of SCD. With 4-6 million Nigerians carrying the sickle cell trait, legislative intervention must complement treatment and care. A national Act could provide a cohesive template for states to follow, balancing public health and individual rights.
Key Findings, Severe Lack of Awareness: The report highlights significant variations in awareness regarding premarital screening laws across regions. In Kaduna, many respondents showed a notable lack of knowledge about the mandatory screening law, pointing to gaps in dissemination and implementation. In contrast, Anambra residents demonstrated considerable awareness of the genotype screening law, attributed to ongoing advocacy by the SCD community and NGOs. Overall, three of the four states surveyed showed very low awareness levels of these laws.
Inconsistent Implementation: The study reveals varying degrees of law enforcement and interpretation among states. Despite existing policies, actual enforcement remains inconsistent, leading to differing approaches and levels of compliance.
Access and Affordability Issues: The report underscores a severe crisis in the availability and affordability of genotype screening, particularly in rural areas. Many Primary Health Care (PHC) centers lack essential resources, driving up costs and limiting access to vital screenings.
Socio-Cultural and Religious Barriers: Deep-rooted socio-cultural and religious beliefs often discourage genotype screening and promote traditional practices over genetic compatibility in marriage. These attitudes contribute to the low acceptance of premarital testing, hampering public health initiatives. Furthermore, individuals living with SCD face significant stigma, diminishing their quality of life and deterring them from seeking necessary medical support.
This comprehensive analysis highlights the urgent need for a standardized and unified approach to SCD management in Nigeria, aiming to improve both public awareness and patient outcomes.
