Health advocates renew calls for stronger response to sickle cell disorder

Public health advocates have renewed calls for stronger public education and decisive policy action to improve awareness, promote early detection, expand access to care, and ensure sustained blood availability for people living with sickle cell disorder.

They said the call is imperative as Nigeria continues to bear the world’s heaviest burden of the inherited condition, despite decades of medical knowledge, awareness campaigns, and advocacy efforts.

Speaking in Abuja on Monday at a blood donation and public advocacy event organised by the Jephthah Ohiomokhare Sickle Cell Foundation in collaboration with partner organisations, the advocates said sickle cell disorder remains both a public health and social challenge, fuelled by poor awareness, weak prevention practices, limited access to specialised care, and persistent stigma.

Executive Director of the Jephthah Ohiomokhare Sickle Cell Foundation, Senami Ohiomokhare, described Nigeria’s sickle cell burden as deeply troubling, noting that awareness has not translated into sufficient preventive behaviour.

She identified low uptake of genotype testing, delayed diagnosis, gaps in access to care, and irregular blood supply as persistent obstacles.

According to her, early testing and informed conversations about genotype compatibility remain critical, particularly among young people, to reduce the number of children born with the condition.

Beyond prevention, she said the foundation is focused on supporting people already living with sickle cell disorder by promoting access to accurate information, modern treatment options, and quality healthcare.

She clarified that while many Nigerians believe there is no cure, bone marrow transplant is a recognised curative option, and several medications can significantly reduce pain crises and improve quality of life when properly administered.

She added that through outreach programmes and essay competitions, the foundation has reached hundreds of students and young people, while continuing to advocate for policy reform, improved care pathways, and an end to stigma and discrimination.

Ohiomokhare said the foundation was created to transform personal loss into sustained advocacy and practical support for people living with sickle cell disorder, noting that although her late son’s life was cut short by the condition, his legacy continues to inspire compassion, responsibility, and action within the sickle cell community.

On her part, media mogul and Executive Director of the Tosin Abimbola Dokpesi Foundation, Tosin Dokpesi, called for stronger implementation of health policies and continuity in government programmes addressing sickle cell disorder.

She argued that policies must translate into measurable action rather than remain dormant in official documents, urging successive administrations to sustain impactful initiatives instead of abandoning them.

Dokpesi also highlighted the need for accurate and updated medical testing, noting that advances in diagnostics mean many Nigerians should reconfirm their genotype and blood group.

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She emphasised the role of education and responsible use of social media, encouraging citizens to seek verified health information and take personal responsibility for preventive healthcare decisions.

On her part, sickle cell survivor Rabi Maidunama, founder of the Maidunama Sickle Cell Foundation, and President of the Pan Africa Sickle Cell Federation, urged Nigerians to replace fear and misinformation with compassion and informed decision-making.

Drawing from personal experience, she said she was diagnosed as a child at a time when genotype awareness and genetic counselling were limited, forcing her family to navigate the condition with little guidance.

Maidunama stressed that sickle cell should be described as a disorder rather than a disease, noting that the latter term wrongly suggests contagion and fuels stigma.

She described the condition as unpredictable and physically exhausting, explaining that pain crises can affect any part of the body and escalate rapidly.

She condemned discrimination, particularly against children and adolescents living with sickle cell, warning that harmful language and social exclusion worsen the emotional toll of the disorder.

The advocacy event also featured a creative collaboration with visual artists, including Etuk Oyinma, who said art offers an alternative platform for amplifying conversations around sickle cell disorder.

He explained that proceeds from the exhibition would support advocacy and care efforts, while also serving as a tribute to Jephthah Ohiomokhare.

According to him, sustained awareness, across both medical and cultural spaces, remains essential to improving outcomes for people living with sickle cell disorder in Nigeria.