Sickle Cell: Survivor writes minister, seeks premarital genotype counselling, testing 

As the world marks World Sickle Cell Day on June 19, Nguvu Change Leader, Onor Obassi Tawo, a Sickle Cell anaemia survivor, who lost her brother to the disease, is drawing the attention of the Ministry of Interior in Nigeria to the urgent need for premarital genotype counselling nationwide during the marriage registration process. 
 
In an open letter to the Minister of Interior, Olubunmi Tunji-Ojo, Onor said: “There is an urgent need to empower couples with vital information to 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.”
 
In June 2023, Onor launched an online campaign urging mandatory genotype testing during marriages where she opened up about her personal story of having been born with Sickle Cell anaemia and also tragically losing her young brother to the disease.  

“I lost my younger brother to Sickle Cell anaemia. In his memory, I started 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 as genetic counselling was not emphasised before marriage, and even our secondary schools do not understand what sickle cell is despite learning genetics as a topic in Biology,” Onor said in her campaign.
 
“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,” Onor says in her open letter.
   
Also, in August 2023, a critical review by Nigeria’s National Institute for Pharmaceutical Research and Development, led by its Director-General, Obi Peter Adigwe, investigated the challenges associated with sickle cell disease in sub-Saharan Africa. 
 
Adigwe and his research team echoed Onor’s concerns. They too proposed premarital genotype screening and comprehensive health insurance coverage for all sickle cell disease patients. They also recommended implementing relevant strategies to reduce the burden of the disease even while targeting total elimination. And this included counselling about how genetic conditions might affect a family.
 
According to the World Health Organisation (WHO), the prevalence rate of Sickle Cell Disease (SCD) in Nigeria is between 20 per cent and 30 per cent of the global burden and two per cent to three per cent of the population suffers from the disease. The mortality rate for children reportedly ranges from 50 per cent and 80 per cent.