Managing sickle cell disease throughout one’s life is a continual challenge involving extended hospital stays and frequent medical appointments, alongside high healthcare expenses.
In light of this, a survivor of this condition, Onor Tawo, has urged the Minister of Interior, Olubunmi Tunji-Ojo, to enforce mandatory premarital genotype counseling and testing during marriage registrations in Nigeria.
Nigeria currently has more than 40 million individuals carrying the sickle cell gene, with an alarming 150,000 babies born annually with the disease, as reported by the Sickle Cell Disorder Registry Nigeria. Shockingly, approximately 100,000 of these infants do not survive past their fifth birthday.
In a letter to the minister, Tawo, who tragically lost her brother to sickle cell disease, emphasized that requiring genotype counseling and testing for all couples prior to marriage could prevent the birth of children predisposed to the illness.
Furthermore, she highlighted that such a measure would alleviate the financial burden on families and the country’s healthcare system.
The letter partly reads, “There is an urgent need to empower couples with vital information, enable them to make informed decisions and potentially prevent the birth of children predisposed to Sickle Cell Disease. Mandating genotype counselling and testing for all intending couples during the marriage registration process will not only educate couples about their genotypes but also alleviate the economic strain on families and the healthcare system.”
“I lost my younger brother to Sickle Cell anaemia. In his memory, I started the Okares Sickle Cell Foundation to promote awareness of the prevention and management of sickle cell disorders. In the course of our work, we found that a lot of young adults do not know their genotypes, genetic counselling is not emphasised before marriage, and even our secondary schools do not understand what sickle cell is, despite learning genetics as a topic in Biology.
“The government’s response to SCD remains insufficient despite the urgent need for better prevention, treatment, and care. Hospitals are inadequately equipped, and the National Health Insurance Scheme fails to provide necessary coverage, leaving many vulnerable. Legislative efforts to address SCD are often criticised for legal inconsistencies and ineffectiveness.”
Tawo emphasized that Nigeria must take proactive measures to address the significant impact of sickle cell disease, rather than simply accepting the status quo, and urged for concrete actions to be taken to combat the condition.
