Every year, an estimated 150,000 babies in Nigeria are born with sickle cell disease (SCD). Yet many people do not live to be older than five because they do not have access to diagnostic tests and comprehensive care.
In response to this challenge, the University of Abuja and the Sickle Cell Support Society of Nigeria have launched the Africa Newborn Screening Consortium (CONSA)’s sites in Abuja and Kaduna.
CONSA’s mission is to evaluate the efficacy of newborn screening and early therapeutic interventions for infants with SCD in Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda and Zambia.
Through the leadership of hematologists and public health officials in these countries, CONSA establishes standard practices for screening and early intervention therapies (such as antibiotic prophylaxis and vaccinations) at participating institutions, which examine and clinical follow-up up to 16,000 infants per year in infants live with SCD.
Sickle cell disease is a genetic disorder that can be transmitted to a child when both parents have the sickle cell trait. Usually, red blood cells are disc-shaped and flexible to move easily through the blood vessels.
For those living with SCD, red blood cells are crescent or ‘sickle-shaped’. These cells do not bend and move easily and can block blood flow to the rest of the body. People with SCD suffer from acute pain episode and chronic pain and can be affected by various organ complications, which can cause disability or even death.
Due to lack of public knowledge about the cause of SCD, and misinformation that it can be spread among individuals, there is intense stigma surrounding SCD. According to the WHO, up to 15 percent of deaths in children under the age of five are due to SCD.
Patients with newborns enable families to know the status of their baby and to seek inexpensive interventions that can reduce adverse health consequences.
In Nigeria, newborns are displayed at various locations in Abuja and Kaduna. In Abuja, the sites include the University of Abuja Education Hospital, Gwagwalada Town Clinic, Dobi Clinic and Dagiri Clinic and other primary and secondary hospitals in the Federal Capital Territory and Federal Medical Center Keffi.
In Kaduna is the Barau Dikko Teaching Hospital, the Yusuf Dantsoho Memorial Hospital, the Gwamna Awan Memorial Hospital, the Kawo General Hospital.
As mothers deliver children to hospitals or bring vaccines to the clinic for the first time, they will be offered the screening.
Professor Obiageli Nnodu, Director, Center for Excellence in Disease and Disease Research and Training, University of Abuja and the Nigerian National Coordinator for CONSA, said: “We are excited to be the first country in CONSA to start demonstrating how newborn screening as a major health intervention can save the lives of babies born in Nigeria with sickle cell disease.
“We are pleased that, despite delays due to the COVID-19 pandemic, we will be able to increase the number of newborns selected and to promote care for all persons living with SCD in partnership with the Federal Capital Territory Health Authority.
“The sites in Abuja and Kaduna will examine newborns and start all those who are positive for SCD testing in clinical follow-up. Staff will examine the long-term health outcomes of people with SCD up to five years and provide inexpensive interventions and education to the family.
“Through such interventions, we aim to reduce mortality rates below five, promote the achievement of Nigerian goals for sustainable development and promote the quality of life for all those affected by SCD.”