SCHAF reaffirms commitment to reducing the sickle cell burden in Nigeria

The Sickle Cell Hope Alive Foundation (SCHAF) has reaffirmed its commitment to reducing the burden of sickle cell disease in Nigeria, describing its annual Sickle Cell Gifting Day gathering as more than a ceremonial event but as a renewed affirmation of collective resolve and action.

Addressing stakeholders, partners, healthcare professionals, and members of the sickle cell community, the founder of SCHAF, Prof. Adeyinka Falusi, stated that the foundation’s mission to reduce the impact of sickle cell disease through awareness, prevention, care, empowerment, research, and advocacy will continue to grow stronger through collaboration and shared responsibility.

Prof Falusi stated that over 66 per cent of the estimated 120 million people living with sickle cell disease worldwide are in Africa, with Nigeria alone accounting for more than six million cases, underscoring the urgent need for coordinated prevention and care strategies.

She stated that a major focus of SCHAF’s advocacy is the promotion of “Know Your Genotype” (KYG) initiatives, encouraging individuals, in particular young people, to understand their genetic status early, given its importance for informed decision-making and compassionate care.

Prof Falusi, however, acknowledged persistent challenges, including inadequate healthcare personnel and limited facilities, particularly at the primary healthcare level, and called on government authorities to strengthen grassroots healthcare systems and ensure that essential resources are available for the early diagnosis and management of sickle cell disease.

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She also advocated for the nationwide implementation of newborn screening for sickle cell disease, particularly in tertiary healthcare facilities, to enable early diagnosis and timely intervention, as well as the integration of sickle cell education into school curricula to promote early awareness and prevention of the disease.

The Provost of the College of Medicine, Professor Temidayo Ogundiran, expressed strong support for SCARF, commending its mission and the tireless efforts of its founder in bringing hope to individuals living with sickle cell disorder and their caregivers.

Professor Ogundiran, represented by the Dean of the Faculty of Nursing, Professor Prisca Adejumo, acknowledged the challenges of sickle cell disorder in Nigeria and called for a change in societal attitudes toward people living with SCD, emphasising that the condition is neither their choice nor their fault.

He therefore urged caregivers and members of the public to provide care wholeheartedly, without stigma, derogatory language, or discrimination, as well as society to treat individuals with sickle cell disease as normal, valuable human beings deserving of dignity and respect.

Speaking on behalf of the Honourable Commissioner for Health at a sickle cell advocacy programme, the Permanent Secretary for Oke-Ogun Health Zone 1, Dr Akinfemi Akinyode, reiterated the Oyo State government’s strong commitment to improving the care, welfare, and quality of life of people living with sickle cell disease, describing access to healthcare as a fundamental right rather than an act of charity.

Dr Akinyode highlighted the Oyo State Health Insurance Agency (OYSHA) as a key intervention under the Basic Healthcare Provision Fund, noting that people living with sickle cell disease can register for free to improve their access to essential health services.

According to him, the state is developing a proactive, coordinated, and sustainable health system, with sickle cell services integrated into the state’s non-communicable disease framework.

Earlier, the president of the Medical Women Association of Nigeria (MWAN), Oyo State branch, Dr Shakrat Olanlege, noted that Nigeria bears the highest burden of sickle cell disease in Africa, making community-based care and maternal involvement especially vital.

According to her, simple yet consistent practices, such as keeping children warm, ensuring optimal nutrition, and providing a safe and supportive environment, play a significant role in helping affected children grow and thrive.

Dr Olanlege stated that preventing infections through proper hygiene, adequate nutrition, maintaining warmth, and timely medical attention can significantly reduce complications and hospital admissions among patients with sickle cell disease.

She reaffirmed MWAN’s commitment to advocating for mothers and caregivers, ensuring they are empowered with the knowledge and support necessary to care for children with sickle cell disease.

Dr Modupe Oresegun, the event’s honoured guest, emphasised the tremendous financial, emotional, and physical strain of raising a child, especially one with sickle cell disease, and advised people to be aware of their genotype to prevent having children affected by sickle cell disease.

“Young people need to be smart about love,” the speaker advised, urging teenagers and young adults to prioritise knowing their genotype before choosing a life partner.

Dr Oresegun also called for proactive measures, such as making genotype testing a legal requirement before marriage, as is the case in developed countries, to help prevent avoidable suffering for both parents and children.