Sickle cell survivor seeks mandatory premarital genotype counselling for couples

As the world observes World Sickle Cell Day on June 19, a sickle cell anaemia survivor has called on the Federal Government through the Ministry of Interior for urgent need to mandate premarital genotype counselling across the country during the marriage registration process.

The Nguvu Change Leader survivor, Onor Obassi Tawo who lost her brother to the disease, in an open letter to the Minister of Interior, Olubunmi Tunji Ojo, said, “ 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.”

Onor who launched an online campaign in June 2023, urged 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 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,” Onor said in her campaign.

Parallelly, 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.

Obi Peter 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 Organization (WHO), the prevalence rate of SCD in Nigeria is between 20% to 30% of the global burden and 2% to 3% of the population suffers from sickle cell disease. The mortality rate for children reportedly ranges from 50% to 80%.

“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 criticized for legal inconsistencies and ineffectiveness. Our nation cannot remain passive in this overwhelming burden; we must act decisively to combat sickle cell disorders,” Onor said in the letter.

ALSO READ THESE TOP STORIES FROM NIGERIAN TRIBUNE 

Citizens need change of mindset for Nigeria to make progress — Tinubu