The President of the Sickle Cell Hope Alive Foundation (SCHAF), Professor Adeyinka Falusi, has called for urgent action to close what she described as the “survival gap” in sickle cell disease care in Nigeria.
Speaking at the 2026 World Sickle Cell Day commemoration, Falusi said Nigeria must move beyond awareness creation to concrete interventions that ensure equity in access to care for persons living with the condition.
She expressed satisfaction with progress made in advocacy but stressed that more must be done to reduce avoidable deaths.
This year’s theme, “Closing the Survival Gap: Equity in Sickle Cell Disease,” she noted, underscores the urgent need for fair and timely access to healthcare services at all levels.
Falusi warned that Nigeria records about 150,000 births annually involving sickle cell traits, adding that many children still die due to late diagnosis and unequal access to treatment.
She called for the introduction of mandatory newborn screening nationwide, insisting that early detection is critical to improving survival outcomes.
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According to her, continuous treatment, regular follow-up, effective pain management, and wider access to hydroxyurea are essential to improving patients’ quality of life.
She also urged stronger attention to immunisation, mental health support, and stigma reduction, warning that discrimination continues to worsen outcomes.
Falusi further called for increased investment in research and improved access to advanced therapies such as gene therapy and bone marrow transplantation, noting that these remain largely inaccessible in Nigeria.
She appealed to families, schools, religious bodies, and health workers to eliminate stigma and work collaboratively with government to ensure no patient is left behind.
Falusi reaffirmed SCHAF’s commitment to sustained advocacy, stressing that every child living with sickle cell disease deserves not just survival, but a full and productive life.
The Commissioner for Health, Oluwaserimi Ajetunmobi, who was represented by the Permanent Secretary, Health Zone 3, Dr Waheed Lanre-Abbas, said the state is making deliberate investments to improve outcomes for persons living with sickle cell disease.
Speaking on her behalf, Dr Lanre-Abbas said the government remains committed to reducing stigma, improving access to essential medicines, and strengthening healthcare delivery through sustained reforms.
He explained that primary healthcare centres have been upgraded with improved infrastructure and services to enhance early diagnosis and referral systems, while also supporting school-based education on genotype awareness and prevention.
Dr Lanre-Abbas, who spoke personally, also shared his experience as a sickle cell carrier, saying it strengthened his passion for advocacy and health system improvement.
He urged persons living with sickle cell disease not to see the condition as a limitation, stressing that many affected individuals have lived long and productive lives.
The Executive Secretary of the Oyo State Health Insurance Agency (OYSHIA), Dr Olusola Akande, reaffirmed the agency’s commitment to expanding access to healthcare for persons living with sickle cell disease.
He said the agency has a target to enrol 10,000 patients into the state health insurance scheme, noting that fewer than 2,000 have been enrolled so far.
According to him, patients facing financial constraints are enrolled free of charge, while others pay a subsidised annual premium of N21,000.
Akande said the initiative is aimed at reducing out-of-pocket expenditure and ensuring equitable access to care.
He encouraged organisations and caregivers to contact OYSHIA for enrolment support, noting that a dedicated hotline has been provided.
He added that the agency is strengthening its monitoring and evaluation systems through institutional and community feedback mechanisms.
“Being SS is not the end of life. It can be a challenge like every other human being can have,” he said.
A Consultant Family Dentistry, Dr Oluwakemi Nasiru, emphasised the importance of integrating oral healthcare into sickle cell management, warning that poor oral hygiene can worsen patient outcomes.
She noted that oral health is essential for nutrition and medication adherence, adding that untreated dental conditions can lead to pain, malnutrition, and poor compliance with treatment.
Nasiru highlighted complications such as dry mouth, bleeding gums, and oral sensitivity during crises, which require preventive dental care.
She called for regular dental check-ups as part of routine management, stressing that prevention is more effective than treatment.
According to her, improved oral health care would enhance nutrition, school attendance, and overall quality of life for patients.
The Chairman of the event, Professor Olaitan Soyanwo, called for stronger multidisciplinary collaboration in sickle cell care, stressing the need to address persistent gaps in treatment.
He said specialists across disciplines must work together to provide holistic care, particularly in pain management, oral health, and long-term wellbeing.
Soyanwo added that global advances in sickle cell care, including genetic-based therapies, are improving life expectancy and outcomes, and should guide future improvements in Nigeria.
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