People living with sickle cell disorder, healthcare professionals, caregivers and advocacy groups have called on the Nigerian government to improve access to quality healthcare, increase research funding and provide stronger support systems for those affected by the condition.
The appeal was made during the 2026 World Sickle Cell Day Red Umbrella Walk held in Lagos under the theme, "From Awareness to Action: Building a Nation of Care." The event brought together hundreds of participants who marched through the city carrying placards urging an end to discrimination, greater awareness of genotype testing and better treatment for people living with sickle cell disorder.
Among the participants was 63-year-old Niniola Phillips-Adeleye, who has lived with sickle cell disorder for more than six decades. She described her journey as one filled with painful crises, hospital admissions and health complications but said she has remained determined to live a fulfilling life despite the challenges.
She explained that while medical care has improved over the years, the financial burden of managing the condition remains overwhelming for many patients. According to her, many people living with sickle cell disorder struggle to afford medications, wound care and even basic daily needs.
Chairperson of the Coalition of Sickle Cell NGOs, Timi Edwin, said awareness campaigns alone are no longer enough. She urged government agencies, private organizations and individuals to work together to improve healthcare services, reduce stigma and invest in scientific research that could eventually lead to a cure.
Edwin noted that advances in treatment have significantly increased life expectancy for people with sickle cell disorder, with many now living into their 40s, 50s, 60s and beyond. However, she stressed that more research is needed to understand the long-term effects of the condition and develop better treatment options.
Advocates also called for increased investment in newborn screening, improved laboratory testing and stricter regulation to reduce cases of incorrect genotype diagnosis. They emphasized that knowing one's genotype before marriage remains one of the most effective ways to reduce the number of children born with the disorder.
Representatives of the Lagos State Ministry of Health announced that free newborn sickle cell screening is now available in more than 70 public health facilities across the state. Parents were encouraged to take advantage of the programme to ensure early diagnosis and treatment for affected children.
Participants concluded that while awareness has improved over the years, greater investment in healthcare, research, early diagnosis and patient support is needed to improve the lives of millions of Nigerians living with sickle cell disorder.
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