Health experts have renewed calls for greater awareness and sustained policy action to reduce the burden of sickle cell disease in the country.
The Executive Director and Co-Founder of Jephthah Ohiomokhare Sickle Cell Foundation (JOSCF), SenamiOhiomokhare, spoke at a blood donation drive and advocacy event themed “Blood for Life: Advancing Sickle Cell Care in Nigeria”. She identified misinformation and entrenched myths as major obstacles to tackling the disease, stressing the need for continuous public education.
Ohiomokhare said the foundation was established following the death of her son, Jephthah Ohiomokhare, on February 4, 2017, due to complications from sickle cell disease. She explained that the event aimed to raise awareness, advocate for improved care, and promote voluntary blood donation, which is vital for patients requiring regular transfusions. She emphasised that sickle cell disorder is manageable and called for an end to discrimination against affected individuals.
“JOSCF was founded not just to preserve Jephthah’s memory but to prevent other families from experiencing similar loss,” she said. “Sickle cell disease is influenced by choices people make, and understanding genotypes before family planning is critical to preventing unnecessary suffering.”
President of the Pan-Africa Sickle Cell Federation, Ms Rebi Maidunama, noted that Nigeria bears the highest global burden of sickle cell disease, with about 25 per cent of Nigerians either carriers or living with the condition. She urged couples to test together and, where possible, repeat tests at different laboratories to ensure accuracy. “Knowing your genotype is essential, but couples must act responsibly to prevent the birth of children with severe sickle cell disease,” she said.
Executive Director of TAD Foundation and former Managing Director of AIT, Dr Tosin Dokpesi, highlighted the severe shortage of specialists in the country.
“Out of roughly 300,000 people living with sickle cell worldwide, Nigeria accounts for about 150,000, yet we have only around 300 specialist doctors. Policies must be implemented, not left in files. Projects that positively affect lives should be sustained, not abandoned,” she said.
Dokpesi also criticised the lack of continuity in government initiatives, calling for consistent programmes that address the scale of the challenge. She encouraged Nigerians to regularly check their blood groups and genotypes using modern diagnostic tools and cautioned against using human rights arguments to justify avoidable decisions with lifelong consequences.
