As the world celebrated the 2022 World Sickle Cell Day at the weekend, a coalition of sickle cell Non-Governmental Organisations (NGOs) urged the Federal Government to implement a policy on compulsory genotype screening of newborns.
The NGOs said the appeal followed the high mortality rate of carrier newborns, even as they canvassed adequate funding and research to contain the disease.
The coalition spoke during a Red Umbrella Walk for Sickle Cell Disorder in Lagos.
Featuring hundreds of sickle cell patients and other volunteers, the march was tagged, “SCD management: Changing the narrative.”
The NGOs took off from Unity Senior High School, Oshodi and walked several streets, advocating the need for people to stop the spread of sickle cell through knowledge of genotype.
Speaking, Consultant Public Health Physician and National Director/CEO, Sickle Cell Foundation Nigeria, Dr. Annette Akinsete, decried the mortality rate in the country, due largely to non-implementation of existing policies at the mitigating pervasiveness of the ailment.
She told newsmen that the government needed to do more policy implementation to curb the rising mortality rate among newborns between ages one and five, who lost their lives to treatable infections.
Her words: “150,000 babies are born in Nigeria with sickle cell every year, and more than 100,000 die before age five. What kills them? It is an infection. Whereas if they are given preventative vaccinations and antibiotics early at infancy, they will not have those infections at all, and they will make that milestone age five and do better.”
Also speaking, founder and Chief Executive Officer, CrimsonBow Sickle Cell Initiative, Timi Edwin, who deplored several issues affecting the carriers, observed: “HMOs (Health Management Organisations) do not even want to take us on board.”
Edwin, who is also a carrier and lost her mother to the disease, said: “We have to start changing the narrative. We are not sticklers, we are conquerors and warriors. We can live very fruitful and fulfilling lives here on earth.”
She added: “Our healthcare system has to be more efficient and empathetic towards people living with sickle cell.”