The Federal Government has been asked to remove the financial barrier to genotype testing by making the service free in public health facilities, as stakeholders push for earlier education on sickle cell disease and genotype compatibility.
The call was made during the public presentation of a book, ‘Understanding Sickle Cell Disease: A Comprehensive Guide for All’, written by Adeshetu 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 stakeholders also advocated the integration of sickle cell education into Nigeria’s school curriculum, arguing that children should learn about genotype compatibility early enough to make informed decisions later in life.
Odiba, herself a sickle cell survivor, and a 54-year-old civil servant with the Office of the Head of the Civil Service of the Federation, said the scale of sickle cell disease in Nigeria was not matched by the level of policy attention and funding devoted to it.
She spoke at the event themed “Awareness Today, Healthier Tomorrow,” where she contrasted the situation with government responses to HIV, tuberculosis and malaria, while calling for stronger investment in diagnosis, treatment and blood services.
“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 hematologists,” Odiba stated.
She further called for the expansion of hospital haematology departments, better-equipped blood banks and the deployment of more specialised personnel to reduce the burden on families caring for people living with the condition.
Dr. Jumai Ahmadu of the Federal Capital Territory Administration, FCTA, supported the demand for government intervention, particularly for people who may be unable to afford testing.
While stressing the responsibility of intending couples to know their genotype, she said financial constraints should not prevent vulnerable Nigerians from accessing the test.
“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 noted.
The campaign is also moving beyond hospitals and health facilities, with Odiba disclosing plans to make sickle cell awareness part of formal education from the basic level through university.
She said she was working with the National Assembly through the Senate Committee Chairman on Education to promote the inclusion of sickle cell education in the curriculum.
The initiative, according to Odiba, is intended to address what she described as widespread ignorance about genotype compatibility and its implications for couples.
“Nigeria ranks highest globally in sickle cell cases due to ignorance regarding genotype compatibility.
“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 warned.
Traditional institutions were also drawn into the campaign, with Hajia Hauwa Ibrahim Adamu, President of the Wives of FCT Traditional Rulers Association, pledging the support of royal mothers across the 17 kingdoms of the FCT.
She said traditional leaders could help challenge misconceptions that continue to fuel stigma against people living with sickle cell disease.
“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,” Hajia Adamu said.
Pastor Samuel Odiba, the author’s husband, meanwhile, called for greater involvement of faith-based organisations and religious leaders in preventing sickle cell births by enforcing pre-marital genotype verification before weddings are officiated.
He said prevention remained the most effective cure, noting that awareness alone did not always translate into decisions based on genotype compatibility, as even healthcare professionals could sometimes make choices influenced by emotional desperation.
