Sickle cell survivor advocates mandatory testing for intending couple

A sickle cell anaemia survivor, Onor Tawo has urged the Minister of Interior, Olubunmi Tunji-Ojo, to make premarital genotype counselling and testing compulsory in Nigeria during marriage registration processes.

Over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell anaemia, 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.

However, in a letter on Monday addressed to the minister, Tawo who lost her brother to the disease, stated that mandating genotype counselling and testing for all intending couples during the marriage registration process would
prevent the birth of children predisposed to sickle cell 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 anemia. 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. Our nation cannot remain passive in this overwhelming burden; we must act decisively to combat sickle cell disorders”