United States-based medical doctors have urged the Federal Government to strengthen legislation to make newborn screening for sickle cell disease compulsory for every child in the country.

They made the call during the Global Alliance for Sickle Cell Disease (GANSID) Clinician Mentorship Programme, themed “Living Strong with Sickle Cell – Knowledge, Strength and Hope,” held in Ibadan, Oyo State.
The programme was organised by the Global Action Network for Sickle and Other Inherited Blood Disorders in collaboration with Chrisbo HB Champions Club.

Speaking at the event, Dr Rasaq Olaosebikan of GANSID at Penn State Children’s Hospital noted that Nigeria bears the highest global burden of sickle cell, with about 100,000 babies born yearly with the disorder, equivalent to the entire sickle cell population of the United States.

“The challenge is that many children are not diagnosed at birth. A lot of sickle cell warriors die without ever knowing their genotype because newborn screening is not compulsory. We are calling on the government to put legislation and infrastructure in place so that every child is diagnosed early and treatment can begin immediately,” he said.

Also speaking, Consultant Family Physician and sickle cell patient, Dr Titilayo Oluwabusi, stressed the need for compulsory newborn screening before hospital discharge.

She added, “We need more information out there for people to know that sickle cell is not a death sentence. The government must also provide accessible vaccination.”

Secretary of Chrisbo Champions Club, Mr Adegoke Akinloye, said the programme was designed as empowerment and capacity building, to give families and caregivers deeper insights into managing sickle cell.