Experts says managing life with sickle cell disease is a lifelong challenge marked by frequent hospital stays and rising medical costs. Onor Tawo, a survivor of the condition, has urged Minister of Interior Olubunmi Tunji-Ojo to make premarital genotype counseling and testing mandatory in Nigeria during the marriage registration process.
Nigeria currently has over 40 million carriers of the sickle cell gene, and approximately 150,000 babies are born each year with the condition, according to the Sickle Cell Disorder Registry Nigeria. Tragically, an estimated 100,000 of these babies do not live to celebrate their fifth birthday.
In a letter addressed to the minister on Monday, Tawo, who lost her brother to the disease, emphasized that mandatory genotype counseling and testing for all intending couples would help prevent the birth of children predisposed to sickle cell disease. She also noted that this measure would alleviate the economic burden on families and the national 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 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.