Two leading sickle cell advocacy groups in Lagos have called on the federal and state governments to enact laws mandating genotype screening for all newborns and citizens, as part of efforts to curb the growing burden of sickle cell disorder in Nigeria.
The call was made during a Sickle Cell Awareness Walk and Free Clinic jointly organised by the CrimsonBow Sickle Cell Initiative and the Sickle Cell Advocacy and Management Initiative on Saturday in Lagos. The event, held in commemoration of 2025 World Sickle Cell Day (June 19), also marked the 70th birthday of the initiatives’ patron and sponsor, Mr. Wole Adeleye.
Over 1,000 people living with sickle cell benefitted from the awareness campaign and free medical services.
Ms. Timi Edwin, Founder and CEO of CrimsonBow, raised concerns over the rising prevalence of the disorder in Nigeria and urged immediate legislative action.
“Nigeria must act now to reduce the burden of sickle cell in the next generation. Mandatory newborn screening and increased government investment in the health sector are crucial,” Edwin said.
She emphasized that sickle cell is not a death sentence and advocated for broader public awareness, a stronger health insurance system, and access to affordable healthcare for those living with the condition.
On the free clinic, Edwin noted that a team of doctors, psychologists, lab scientists, and other medical professionals were on hand to provide care, medication, and counselling to participants.
Also speaking, Mrs. Toyin Adesola, Executive Director of the Sickle Cell Advocacy and Management Initiative, urged lawmakers to declare sickle cell disorder a public health emergency.
“The time to act is now. Many Nigerians with the condition face significant health and social challenges,” said Adesola, a sickle cell survivor nearing 60.
Mr. Wole Adeleye, a 70-year-old sickle cell warrior and health advocate, expressed gratitude for his life and called for improved treatment options, including regular check-ups, access to medication, and robust health insurance schemes.
“Newborn testing is crucial. We must also promote the use of prophylactic penicillin and hydroxyurea, especially for children, and ensure doctors are trained in pain management,” he said.
Mrs. Christina Bakare, Project Coordinator at CrimsonBow, noted that Nigeria bears the highest sickle cell burden in Africa, and appealed to legislators to support mandatory screening laws to help protect future generations.
Mrs. Bola Deji-Adeyale, another survivor who was diagnosed at age 12, stressed the importance of early detection and education.
“Many deaths occur because testing isn’t done early enough. Symptoms vary widely, and many people don’t realise what’s happening until it’s too late,” she said.
She also shared her doctor’s top five commandments for living with sickle cell:
1. Stay hydrated
2. Take daily medication
3. Avoid stress
4. Avoid extreme weather
5.Know your limits
The event concluded with a community walk from Rotary District 9110 in Ikeja GRA to Ikeja Under-bridge, during which volunteers distributed flyers and sang awareness songs, encouraging the public to know their genotype and support sickle cell advocacy.