Lagos sickle cell groups urge mandatory screening

Sickle Cell Initiatives in Lagos have urged both federal and state governments to enact a law mandating genotype screening for all newborns and citizens.

The CrimsonBow Sickle Cell Initiative and Sickle Cell Advocacy and Management Initiative made the call during a sickle cell awareness walk and free clinic held on Saturday.

The walk and clinic benefitted no fewer than 1,000 patients and marked the 70th birthday of the initiatives’ patron and sponsor, Mr Wole Adeleye.

It also commemorated the 2025 World Sickle Cell Day, which is observed annually on June 19.

Ms Timi Edwin, Founder and CEO of CrimsonBow Initiative, expressed concern over the rising cases of sickle cell disorder in Nigeria.

She said compulsory genotype screening was key to tackling the disorder, and urged the government to act to protect future generations.

Edwin noted that sickle cell disorder is not a death sentence and called for wider public awareness.

“Nigeria must act now to reduce the burden of sickle cell in the next generation,” she stated.

She stressed the need for laws mandating newborn screening and increased government investment in the health sector.

Edwin also called for a more robust health insurance scheme and affordable healthcare for people living with the condition.

On the free clinic, Edwin said both initiatives invited doctors, psychologists, lab scientists and other specialists to provide care and medication.

Mrs Toyin Adesola, Executive Director of Sickle Cell Advocacy and Management Initiative, urged lawmakers to declare sickle cell a public health emergency.

“The time to act is now. Many Nigerians live with the condition and face serious challenges,” Adesola said.

She added that support systems are vital, sharing her experience as someone living with the disorder who is nearing 60.

Mr Wole Adeleye, a 70-year-old sickle cell survivor and advocate, called for affordable treatment and improved care.

He thanked God for his life and emphasised the need for regular check-ups, good medication and health insurance.

“Newborn testing is crucial. We must also promote the use of prophylactic penicillin for patients,” Adeleye said.

He advocated for wider use of hydroxyurea, especially for children, and better pain management training for doctors.

Mrs Christina Bakare, Project Coordinator at CrimsonBow, said Nigeria has the highest number of sickle cell patients in Africa.

She appealed to lawmakers to help save future generations by supporting awareness and mandatory screening laws.

Another survivor, Mrs Bola Deji-Adeyale, aged 47, called for greater public education and early detection efforts.

She said her own diagnosis came at age 12, after enduring severe pain, and noted that symptoms vary between individuals.

“Many deaths occur because testing isn’t done early enough,” she added.

She shared her doctor’s top five commandments: drink water, take daily medication, avoid stress, avoid extreme weather and know your limits.

The groups also conducted free medical consultations, testing and treatment for hundreds of participants.

They held an awareness walk from Rotary District 9110 in Ikeja GRA to Ikeja Under-bridge, sharing flyers and singing.