Sickle Cell: Laws Should Be Implemented To Curb It's Spread - Experts to FG

The study, “A Comparative Study of Existing Sickle Cell Laws in four Nigerian States,” which was released in September during Sickle Cell Awareness Month.

This study clarifies the gap in the legislation pertaining to premarital genotype testing and the general lack of knowledge regarding sickle cell disease, especially in the states under investigation.

The study, which looked at the states of Anambra, Kano, Kaduna, and Abia, found notable differences in the general public’s knowledge of and satisfaction with state legislation.

The survey found that whereas Anambra has benefited from vigorous campaigning, leading to more knowledgeable citizenry, the levels of awareness in Kano, Kaduna, and Abia are startlingly low.

Onor Obassi-Tawo, the Nguvu Change Leader, stated that the report is released at a critical juncture, matching national conversations on developing a uniform framework for SCD management.

“Our results demonstrate the urgent need to close these gaps to better improve outcomes for SCD patients throughout Nigeria,” he stated.

Although the Federal Government’s sickle cell centers and newborn screening programs are praiseworthy, a significant financial commitment and coordinated effort are required to alleviate the burden of sickle cell disease.

“Since 4-6 million Nigerians are sickle cell trait carriers, legislative intervention is necessary to support medical care and treatment.”

We would be pleased to make recommendations and contributions as the Nigerian Senate considers the National Bill, which addresses the management of sickle cell disease (SCD), for the third time.

The National Act might offer states a model that strikes a compromise between protecting individual liberties and promoting public health.

But he added that the study’s main conclusions showed that different regions had significantly differing levels of awareness about state legislation pertaining to premarital screening.

For example, in Kaduna State, participants showed a conspicuous deficiency in knowledge on the mandatory premarital screening statute, suggesting a possible deficiency in the communication and execution of the law within the state.

Anambra State’s high level of genotype screening law awareness has been linked to continued lobbying efforts by the SCD community, including non-governmental organizations. Very low levels of awareness of the laws were found in three of the four states that were surveyed.

“The way the law was applied and interpreted varied depending on the state. However, in spite of the policies’ existence, different regions’ actual application and enforcement of the law continue to differ.

The lack of a uniform legal framework resulted in disparate strategies and variable degrees of enforcement among the states that had passed these laws.

The study also brought attention to a serious problem with genotyping screening’s accessibility and cost, particularly in rural areas.

It was discovered that a large number of Primary Health Care (PHC) facilities lack the required resources, which raises expenses and restricts access to critical screenings.”

“This seriously impairs Nigeria’s healthcare system’s ability to provide early detection and efficient management of SCD, along with infrastructure and budget shortages.

Furthermore, ingrained sociocultural and theological views have worked against genotype screening and in favor of customs over genetic compatibility in marriage.

“These elements hinder public health activities by contributing to the low acceptance of premarital testing. Furthermore, a great deal of stigma surrounds people with sickle cell disease (SCD), which lowers their quality of life and deters them from getting the care they need.

Thus, among many other recommendations made by the study were to increase public awareness, interact with religious and cultural leaders, provide universal health care and accessibility, and establish and enforce ethical principles.

The Nguvu Change Leader added that since Nigeria is still one of the nations most afflicted by SCD worldwide, the ideas may offer policymakers a critical road map as they attempt to create an all-encompassing national framework to lessen the disease’s burden there.