The growing burden of sickle cell disease in Nigeria – and across sub-Saharan Africa – has prompted calls by health professionals and researchers for urgent, co-ordinated action, reports Punch.
Nigeria has one of the highest rates, globally, of the disease, with about 150 000 born annually with the condition, delegates heard last week at the Centre of Excellence for Sickle Cell Disease Research and Training (CESRTA) and the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa Consortium (PACTS) meeting, held at the University of Abuja – now known as Yakubu Gowon University.
The PACTS programme is a collaboration funded by the UK’s National Institute for Health and Care Research (NIHR), working with partners in Nigeria, Zambia, Ghana, the UK, and the USA to improve care for sickle cell patients
Vice-chancellor Professor Hakeem Fawehinmi said the occasion was “timely and critical to millions affected by the condition”, and that thousands of children would “face a lifetime of pain, interrupted schooling, compromised livelihood, and inadequate care, mostly because of a lot of our resource-poor settings in the areas outside the centre, peri-urban areas, rural areas”.
Through the PACTS programme over the past four years, evidence had been generated that was capable of transforming outcomes if properly implemented, he said.
“As PACTS enters its final phase, the question before us goes beyond what research we have uncovered, and what have we discovered. Equally important is what we do with these findings, and who is responsible for ensuring that these gains are implemented and sustained.”
He urged stakeholders to move beyond discussions to concrete action, calling for a clear action plan with a focused roadmap.
A co-principal investigator of PACTS, researcher and haematologist with the Liverpool School of Tropical Medicine, Professor Imelda Bates, underscored the patient-focused approach of the project
She also revealed that about one in four Nigerians carries the sickle cell gene, while between 1.5% and 2% of the population has the disease, and that increased screening is essential for early diagnosis and improved outcomes.
Co-principal investigator of PACTS Professor Obiageli Nnodu said the consortium has been assessing care delivery across health facilities in the Federal Capital Territory, covering about 300 patients in six facilities.
“There are certain standards they ought to maintain, relating to penicillin prophylaxis, hydroxyurea utilisation, which is a disease-modifying treatment, and blood transfusion, and we are looking at how these are being applied,” she added.
Nnodu noted that community engagement has revealed significant barriers, and that stigma remained a major obstacle to early treatment, often preventing mothers from taking their babies in for care.
Awareness efforts were ongoing, she added, including radio broadcasts.
The PACTS programme uses a patient-centred approach focusing on better clinical care, training of health workers, improving data systems, and involving communities, while using joint problem-solving methods to design and test solutions in real healthcare settings.
CESRTA, created in 2015 to address Nigeria’s heavy burden of sickle cell disease, works to turn findings into health policy. Its multidisciplinary team collaborates with national and international partners to improve care and develop better treatment approaches.
The centre also runs large-scale programmes like SPARC-Net and CONSA, which have built extensive patient registries and supported newborn screening across multiple African countries.
Punch article – Health experts urge urgent action on sickle cell in Nigeria, Africa (Open access)
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