Make laws to address sickle cell crisis, FG told
18 September 2024 |
2:01 am
To tackle Sickle Cell Disease (SCD), the Nguvu Change Leader, Onor-Obassi Tawo, with the support of the Nigerian Nguvu Collective team, has called for a national legal framework to address sickle cell disease in Nigeria.
To tackle Sickle Cell Disease (SCD), the Nguvu Change Leader, Onor-Obassi Tawo, with the support of the Nigerian Nguvu Collective team, has called for a national legal framework to address sickle cell disease in Nigeria.
She made the call, yesterday, in a new report, titled: “A Comparative study of existing sickle cell laws in four Nigerian states, launched during the sickle cell awareness month in September”.
The study sheds light on the lacuna in the premarital genotype testing laws and the lack of awareness about SCD, particularly in the states studied. The study, which covers Anambra, Kano, Kaduna, and Abia, revealed significant disparities in public awareness and the effectiveness of state laws.
It revealed that while Anambra State had benefited from active advocacy, resulting in better-informed citizens, Kano, Kaduna, and Abia suffered alarmingly low awareness levels.
Obassi-Tawo said the report came at a pivotal moment, coinciding with national discussions on creating a unified framework for SCD management. She said: “Our findings highlight the urgent need to address these gaps to better improve outcomes for SCD patients across Nigeria. While the Federal government’s initiatives, like newborn screening and sickle cell centres, are commendable, a massive investment of resources and a concerted effort is needed to address the burden of SCD.
“With an estimated four to six million Nigerians carrying the sickle cell trait, legislative intervention must complement treatment and care. A national Act could provide a balanced template for states to follow, ensuring both public health and individual freedoms are respected.”
The study identified several critical issues, including a severe lack of awareness, which proved a major handicap for effective SCD control and revealed a significant variation in awareness regarding state laws related to premarital screening across different regions.
“In Kaduna State, respondents displayed a notable lack of awareness about the mandatory premarital screening law, indicating a potential gap in the dissemination and implementation of the legislation within the state. In Anambra State, considerable awareness of the state law on genotype screening was noticed, attributed to ongoing advocacy efforts by the SCD community (including NGOs). Three of the four states surveyed showed very poor awareness levels of the Laws.”
“Inconsistent implementation and lack of standardised framework create a lacuna: Each state demonstrated varying degrees of implementation and interpretation of the law,” it said.
Despite the existence of these policies, the report noted that the actual enforcement and execution of the laws remained inconsistent across these regions, adding that the absence of a standardised legal framework led to differing approaches and varying levels of enforcement across the states where these laws had been enacted.
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