Solomom Odeniyi
Managing life with sickle cell disease, experts say is a lifelong hurdle that comes with long hospital stays and visitation, amid soaring medical costs, based on this, a survivor of the medical condition, Onor Tawo has called on the Minister of Interior, Olubunmi Tunji-Ojo, to make premarital genotype counselling and testing compulsory in Nigeria during marriage registration processes.
Nigeria as it stands has over 40 million carriers of the sickle cell gene and an estimated 150,000 babies are born every year with the condition, according to a report by Sickle Cell Disorder Registry Nigeria.
The report added that sadly, an estimated 100,000 of these babies do not live to celebrate their fifth birthday.
In a letter on Monday addressed to the minister, Tawo, who lost her brother to the disease, said mandating genotype counselling and testing for all intending couples during the marriage registration process would prevent the birth of children predisposed to SC Disease.
She added that it would also help to curb the economic strain on families and the nation’s healthcare.
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 insisted that Nigeria cannot remain passive in the overwhelming burden exerted by sickle cell and called for decisive action to be taken to combat the disease.
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