In a timely new study released during Sickle Cell Awareness Month, Nguvu Change Leaders have sounded the alarm on critical shortcomings in Nigeria’s state laws regarding Sickle Cell Disease (SCD). As the Nigerian Senate deliberates on a National Bill to address SCD, the study highlights significant issues in existing laws and underscores the need for a national legal framework.
The comparative report, “A Comparative Study of Existing Sickle Cell Laws in Four Nigerian States,” examines the states of Anambra, Kano, Kaduna, and Abia. It reveals wide disparities in public awareness and inconsistent enforcement of genotype testing laws, especially in states like Kano and Kaduna, where awareness levels are alarmingly low.
“This report comes at a pivotal moment,” said Nguvu Change Leader, Onor Obassi-Tawo, one of the authors of the study. “Our findings highlight the urgent need to address these gaps to better improve outcomes for SCD patients across Nigeria.”
According to the study, while Anambra has benefited from robust advocacy campaigns, helping citizens better understand the importance of premarital genotype screening, other states lag significantly behind. In Kaduna, for example, many residents remain unaware of existing laws requiring premarital screening, raising questions about the effectiveness of the legislation.
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Durga Nandini, Co-founder of Nguvu Collective, described the findings as “glaring gaps” that could hinder any meaningful progress in the fight against SCD. “We hope this report will spark constructive debates and inform the proposed National Bill,” she said, noting that the current legal landscape offers little uniformity, and patients are often left to navigate inconsistent healthcare systems.
The study also sheds light on critical healthcare challenges, such as the high cost and limited availability of genotype testing, particularly in rural areas. Many primary healthcare centers lack the resources to conduct early screening, exacerbating the country’s already fragile healthcare system.
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“Many Nigerians struggle to access and afford genotype screening services,” the report notes, adding that this poses a major obstacle to early diagnosis and effective SCD management.
Social and cultural barriers further complicate matters, with deep-rooted beliefs often discouraging premarital testing and perpetuating stigma against individuals living with SCD. This not only affects the mental and physical well-being of patients but also discourages them from seeking medical care.
Among the report’s key recommendations are calls for more aggressive public awareness campaigns and stronger engagement with cultural and religious leaders to help promote genotype screening and dispel harmful myths about the disease. It also advocates for universal healthcare access for SCD patients, ensuring affordability of treatment and care.
With an estimated 4-6 million Nigerians carrying the sickle cell trait, Obassi-Tawo stressed the importance of immediate action. “A national act could provide a balanced template for states to follow, ensuring both public health and individual freedoms are respected.”
As Nigeria is considered the most affected country by SCD, both in terms of the number of people living with the disease and the annual incidence of new cases, the findings of this study are expected to play a crucial role in shaping future policies and legislation.