Sickle Cell: Stakeholders Demand Free Genotype Tests, Sickle Cell Lessons in Schools

By Joyce Remi-Babayeju

Stakeholders have urged the Federal Government to remove the financial barriers to genotype testing by making the service free in public hospitals and introducing comprehensive sickle cell education into the nation’s school curriculum.

They said early knowledge of genotype status and better public understanding of Sickle Cell Disease (SCD) could help reduce preventable cases and ease the physical, emotional and financial burden on affected families.

The stakeholders spoke in Abuja at the public presentation of “Understanding Sickle Cell Disease: A Comprehensive Guide for All,” written by Mrs. Adeshetu Musa P. Odiba, a 54-year-old sickle cell survivor and civil servant with the Office of the Head of the Civil Service of the Federation.

The event, themed “Awareness Today, Healthier Tomorrow,” attracted government officials, traditional rulers, health advocates and members of the public.

Presenting the case for stronger government intervention, Odiba said Nigeria needed to give sickle cell disease greater attention in its public health planning, particularly in the areas of diagnosis, blood services and specialist care.

She called for free genotype screening nationwide, improved laboratory services, better-equipped blood banks and the recruitment of additional haematologists and other specialised health personnel.

Odiba said the level of institutional attention given to diseases such as HIV, tuberculosis and malaria should also be reflected in efforts to address sickle cell disease.

“Look at HIV, tuberculosis and malaria—there are dedicated agencies and high sensitivity towards them. But with sickle cell, millions are suffering,” she said.

According to her, making genotype testing accessible at no cost would ensure that financial limitations do not prevent Nigerians from knowing their status before marriage.

Dr. Jumai Ahmadu of the Federal Capital Territory Administration supported the proposal, saying intending couples should be encouraged to undergo genotype testing while government provides support for people who cannot afford the service.

“Anyone intending to get married should carry out this test, but for those who are vulnerable, the government should step in and make provision for them to undergo genotype testing for free,” Ahmadu said.

Beyond testing, Odiba said prevention efforts must begin early, disclosing plans to push for the inclusion of sickle cell education in the curriculum from basic education through university.

She said discussions were already being held with the National Assembly, including the Senate Committee Chairman on Education, to promote awareness of genotype compatibility among young Nigerians.

Odiba stressed that knowledge acquired before young people enter relationships could help them make informed reproductive and marriage decisions.

President of the Wives of FCT Traditional Rulers Association, Hajia Hauwa Ibrahim Adamu pledged the support of royal mothers across the FCT’s 17 kingdoms to take the awareness campaign to communities.

She urged families to reject misconceptions and stigma surrounding the condition.

“This book shows that sickle cell is not a curse or witchcraft, but a medical condition that requires love, knowledge and care,” she said.

Adamu added that traditional institutions would use palaces and community meetings to encourage premarital genotype testing and promote support for people living with sickle cell.

The author’s husband, Pastor Samuel Odiba, also called for greater involvement of churches, mosques and other faith-based institutions in prevention and awareness efforts.

He urged religious leaders to encourage intending couples to verify their genotype before marriage ceremonies, noting that  prevention and informed decision-making are  key components of the fight against SCD.

The stakeholders also stressed the need to strengthen specialist services and blood transfusion infrastructure to improve care for people already living with the condition.