Nigeria urgently needs legal framework to combat sickle cell disease — Study

As the world observes Sickle Cell Awareness Month, Nigeria is grappling with the devastating impact of Sickle Cell Disease (SCD), which affects millions of its citizens.

A recent study by Nguvu Change Leaders has highlighted critical gaps in state laws and their implementation, underscoring the urgent need for a unified national framework to manage SCD.

The study, titled “A Comparative Study of Existing Sickle Cell Laws in Four Nigerian States,” reveals deficiencies in premarital genotype testing laws and the alarming lack of awareness about SCD. Conducted in Anambra, Kano, Kaduna, and Abia states, the research uncovers significant disparities in public awareness and the effectiveness of state laws.

“Nigeria has had sub-national laws on Sickle Cell Disease since 2017, but no efforts have been made to assess their real-world impact,” said Durga Nandini, Co-founder and Chief Advisor of Nguvu Collective. “This study is a crucial step toward informing the proposed National Bill on Sickle Cell Disease.”

SCD is a genetic disorder that affects hemoglobin production, leading to severe pain, anemia, and an increased risk of infections. Nigeria has one of the highest prevalence rates globally, with 4-6 million citizens carrying the sickle cell trait.

The Nguvu Change Leaders’ study identified several critical issues, including a severe lack of awareness about SCD and premarital screening laws, inconsistent implementation of policies, limited access to genotype screening services, and socio-cultural and religious barriers to genotype screening.

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“These findings have serious implications for Nigeria’s healthcare system, which struggles to provide adequate care for SCD patients. The existing state laws are insufficient, and their implementation is inconsistent,” said Onor-Obassi Tawo, a Nguvu Change Leader. “A national framework is crucial to address these gaps and ensure effective management of SCD.”

The proposed National Bill on Sickle Cell Disease aims to provide a unified approach to managing SCD. However, its passage has been delayed multiple times. “We urge policymakers to expedite the passage of the National Bill,” said Nandini. “Nigeria cannot afford to wait any longer to address the burden of SCD.”

The study recommends increasing public awareness, engaging religious and cultural leaders, ensuring universal healthcare accessibility, and establishing ethical guidelines for genotype screening.

As Nigeria marks Sickle Cell Awareness Month, citizens are calling for action. “We need a national framework to protect our rights and ensure access to quality healthcare,” said Aisha Mohammed, an SCD patient.

The Nigerian government has initiated programs to combat SCD, including newborn screening and sickle cell centers. However, more needs to be done. “A national legal framework will complement these efforts and ensure a coordinated response to SCD,” said Dr. Chika Okeke, a healthcare expert.

As the debate on the National Bill continues, Nigerians living with SCD remain hopeful. “We are tired of living in pain and fear,” said Mohammed. “We need a national framework to give us hope for a better future.”

The passage of the National Bill on Sickle Cell Disease is critical to addressing the gaps in existing state laws and ensuring the effective management of SCD. Nigeria cannot afford to wait; the lives of millions depend on it.