Sickle Cell Awareness Month: New Study Reveals Urgent Need For a National Legal Framework on Sickle Cell Disease in Nigeria 

Timely Comparative Analysis by Nguvu Change Leaders identifies the deficiencies of existing state laws  and coincides with a proposed National Bill on Sickle Cell

As the Nigerian Senate for the third time deliberates on the proposed National Bill to address the management of Sickle Cell Disease (SCD), Nguvu Change Leader Onor-obassi Tawo, with the support of the Nigerian Nguvu Collective team has released a pioneering comparative study that underscores critical gaps in the existing state policies and their implementation. 

The report, titled “A Comparative Study of Existing Sickle Cell Laws in Four Nigerian States”, launched during the Sickle Cell Awareness Month in September, 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 covers the states of Anambra, Kano, Kaduna, and Abia, revealing significant disparities in public awareness and the effectiveness of state laws. While Anambra has benefited from active advocacy, resulting in better-informed citizens, Kano, Kaduna, and Abia suffer from alarmingly low awareness levels.

“This report comes at a pivotal moment, coinciding with national discussions on creating a unified framework for SCD management,” says Nguvu Change Leader Onor Obassi-Tawo. 

“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 4-6 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.”

Key Findings: The study identifies several critical issues, including:

• Severe Lack of Awareness Proves a Major Handicap for Effective SCD Control:
  The report reveals 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 & Lack of Standardised Framework Creates a Lacuna: Each state demonstrated varying degrees of implementation and interpretation of the Law. Despite the existence of these policies, the actual enforcement and execution of the laws remain inconsistent across these regions.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.
• Nigerians Struggle to Access and Afford Genotype Screening Services: The report highlights a severe crisis in the availability and affordability of genotype screening, especially in rural areas. Many Primary Health Care (PHC) centres lack the necessary resources, driving up costs and limiting access to essential screenings. This, combined with infrastructure and funding deficiencies, severely hampers Nigeria’s healthcare system’s capacity to offer early detection and effective management of SCD.
• Socio-Cultural and Religious Barriers Give Rise to Stigma & Poor Information: Deep-rooted socio-cultural and religious beliefs often discourage genotype screening and promote traditional practices over genetic compatibility in marriage. These factors contribute to the low acceptance of premarital testing, impeding public health initiatives. Additionally, individuals living with SCD face significant stigmatisation, which not only diminishes their quality of life but also discourages them from seeking necessary medical support.

This qualitative study employed a comprehensive research methodology including In-Depth Interviews with healthcare practitioners, doctors, sickle cell advocates, patients, and religious leaders across the four states, Social Media Monitoring and Comparative Analysis of 4 existing State Laws. 

The study provided valuable insights into awareness levels on Sickle Cell Disease, the challenges of information dissemination, the influence of cultural and religious beliefs, disparities in awareness, the effectiveness of outreach efforts, and the potential impact of a national framework.

“Since 2017, Nigeria has had sub-national Laws on Sickle Cell Disease, but no efforts have been made to assess the real world impact of these Laws. Nguvu Change Leader’s Onor Obassi-Tawo’s Comparative Analysis is a strong step towards informing the proposed National Bill on Sickle Cell Disease. It exposes glaring gaps in the prevention, control and management of the disease and spotlights the urgent need for a standardised and unified national approach to tackle SCD. We hope this report will spark constructive debates and inform the proposed National Bill,” says Durga Nandini, Co-founder and Chief Advisor of Nguvu Collective.

Recommendations: The report offers several actionable recommendations to address the identified gaps:

Enhance Public Awareness: Implement targeted, clear, and accessible messaging to promote genotype screening and increase public knowledge of SCD.

Engage Religious and Cultural Leaders: Leverage the influence of these leaders to spread essential information, particularly in underserved areas.

Universal Health Care and Accessibility: SCD patients should have access to universal health care that ensures affordability of drugs and healthcare services. 

Establish and Enforce Ethical Guidelines: Protect individuals’ rights by ensuring confidentiality and preventing discrimination during the screening process.

These findings and recommendations could provide a crucial roadmap for policymakers as they work to develop a comprehensive national framework to reduce the burden of SCD in Nigeria, which remains one of the countries most affected by this disease globally.