Stakeholders, health advocates and traditional leaders have called on the Nigerian government to provide free genotype testing at public health facilities nationwide to help reduce the burden of sickle cell disease (SCD).
They made the call at the public presentation of Understanding Sickle Cell Disease: A Comprehensive Guide for All, authored by Mrs Adeshetu Musa P. Odiba, a 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”, brought together government officials, traditional leaders, health advocates and other stakeholders in Abuja.
Speaking at the event, Odiba said sickle cell disease continued to place a significant health and financial burden on affected families, despite efforts to raise awareness about the condition.
She called for free genotype screening, improved laboratory facilities, better-equipped blood banks and increased availability of specialised healthcare personnel.
“Look at HIV, tuberculosis and malaria – there are dedicated agencies and high sensitivity towards them.
“But with sickle cell, millions are suffering. We want the government to make genotype testing completely free, expand laboratory facilities and blood banks, and employ more haematologists,” Odiba said.
Also speaking, Dr Jumai Ahmadu of the Federal Capital Territory Administration (FCTA) said intending couples should take responsibility for knowing their genotypes, while the government should provide support for people who cannot afford testing.
“Genotype testing is mandatory in a sense. 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.
Odiba also disclosed that efforts were underway to promote sickle cell education through Nigeria’s school curriculum, from basic education to the university level.
She said she was collaborating with the National Assembly through the Senate Committee Chairman on Education to promote early education on genotype compatibility among young Nigerians.
Odiba said greater awareness of genotype compatibility could help young people make informed decisions about relationships and marriage.
“If your genotype is AS, you must not marry another AS person because the risk of passing on the condition is high. Love alone is not enough; love often fades when the heavy financial and emotional toll of managing sick children sets in,” she said.
Also speaking, Hajia Hauwa Ibrahim Adamu, President of the Wives of FCT Traditional Rulers Association, pledged the support of traditional institutions across the FCT to raise awareness about sickle cell disease and reduce stigma against people living with the condition.
“This book shows that sickle cell is not a curse or witchcraft but a medical condition that requires love, knowledge, and care.
“As mothers, we must encourage pre-marital genotype testing and support our warriors without shame. We will take this message to our palaces and community town halls,” Adamu said.
The author’s husband, Pastor Samuel Odiba, called for greater involvement of faith-based organisations and religious leaders in promoting genotype testing before marriage.
He urged religious leaders to encourage couples to verify their genotype status before marriage, saying awareness and early knowledge could help couples make informed decisions.
He added that lack of awareness and emotional considerations could sometimes influence decisions even among people with access to medical information.
