Health professionals and researchers have called for urgent and coordinated action to address the growing burden of Sickle Cell Disease in Nigeria and across Sub-Saharan Africa.
They made the call at the Centre of Excellence for Sickle Cell Disease Research and Training and the Patient-Centred Sickle Cell Disease Management in Sub-Saharan Africa Consortium meeting held at the University of Abuja, now known as Yakubu Gowon University, on Wednesday.
In his welcome remarks, the Vice Chancellor of the university, Prof Hakeem Fawehinmi, described the gathering as “timely and critical to millions affected by the condition.”
He noted that Nigeria bears one of the highest burdens of sickle cell disease globally, with about 150,000 children born annually with the condition.
“Sadly, many of them will face a lifetime of pain, interrupted schooling, compromised livelihood and inadequate care, especially in resource-poor, peri-urban and rural settings,” the VC said.
The professor added that research conducted under the PACTS programme over the past four years had generated evidence capable of transforming patient outcomes if properly implemented.
“As PACTS enters its final phase, the question before us goes beyond what research we have uncovered or discovered.
“Equally important is what we do with these findings and who is responsible for ensuring that these gains are implemented and sustained,” he added.
The VC urged stakeholders to move beyond discussions to concrete action.
“The evidence before us today is a clear call to action. We need a focused roadmap and implementation plan,” Fawehinmi said.
Also speaking, the Bursar of the university, Shiva M’ovul-Kondoun, shared a personal account of the impact of sickle cell disease, describing the initiative as a beacon of hope.
She recounted losing six siblings to the disease, highlighting the devastating consequences of poor access to care.
“I have witnessed firsthand the catastrophic effects of poor management of sickle cell disease in this country.
“I watched my siblings lying side by side in one room while my mother and the rest of us struggled to save their lives as they received blood transfusions. It was a nightmare I wish not to remember.
“I lost six siblings to sickle cell disease before they reached the age of 30,” the bursar said.
She stressed the need for local ownership of interventions amid declining global funding.
“Access to care was scarce, and inclusive management systems were almost non-existent. But today, I am encouraged that CESTRA is changing the narrative.
“I want to thank you all for choosing this university for this workshop. At the same time, I call on stakeholders to ensure that the management of sickle cell disease in this country is not left solely in the hands of foreign partners,” M’ovul-Kondoun added.
A Co-Principal Investigator of PACTS and haematologist with the Liverpool School of Tropical Medicine, Prof Imelda Bates, underscored the patient-focused approach of the project.
“We are really focused on patients with sickle cell disease, their families and caregivers.
“We are trying to understand their major challenges and identify sustainable local solutions together with them,” she said.
Bates highlighted the social and economic burden faced by patients and families.
“They are a very vulnerable group. Many pay huge out-of-pocket costs and some families have several children living with the disease. It is a very difficult situation,” she added.
Bates also stressed the importance of safeguarding reforms across participating institutions.
“One of the positive outcomes of this project is that safeguarding practices and training have now been adopted by all the universities involved.
“That means the impact will extend to tens of thousands of students,” she said.
Bates further revealed that about one in four Nigerians carries the sickle cell gene, while between 1.5 and two per cent of the population lives with the disease.
“So it is really common,” she said, adding that increased screening is essential for early diagnosis and improved outcomes.
The Director of the Centre in Nigeria and Co-Principal Investigator of PACTS, Prof Obiageli Nnodu, said the consortium had been assessing care delivery across health facilities in the Federal Capital Territory.
“We have been engaging with patients enrolled in care across six hospitals and healthcare facilities in the FCT — three tertiary hospitals and three primary healthcare centres — covering about 300 patients,” she said.
Nnodu explained that the study evaluates adherence to national treatment standards.
“There are standards regarding penicillin prophylaxis, hydroxyurea use, which is a disease-modifying treatment, and blood transfusion.
“We are assessing how these standards are being implemented in patient care,” she added.
Nnodu said community engagement had revealed major barriers to treatment, particularly stigma.
“We found that stigma in communities prevents mothers from bringing their babies in for care,” she said.
Nnodu also highlighted ongoing awareness campaigns.
“We even have a radio programme titled ‘Before It’s Too Late,’ which will soon air across stations to sensitise communities,” she added.
The meeting brought together stakeholders from several African countries and international partners.
PACTS is a research programme aimed at improving care for people living with sickle cell disease in Sub-Saharan Africa. Funded by the United Kingdom’s National Institute for Health and Care Research, the initiative brings together researchers, healthcare workers, policymakers and communities to strengthen health systems and improve patient outcomes.
The programme operates in countries including Ghana, Nigeria and Zambia using a patient-centred approach focused on improving clinical care, training health workers, strengthening data systems and promoting community engagement.
The Centre of Excellence for Sickle Cell Disease Research and Training in Nigeria was established in 2015 to address the country’s heavy burden of sickle cell disease, with more than 150,000 babies born annually with the condition.
The centre conducts research, trains healthcare workers and works with national and international partners to improve care and influence policy.
It also runs major programmes such as SPARC-Net and CONSA, which have developed large patient registries and supported newborn screening across multiple African countries, helping to improve early detection and treatment of sickle cell disease.
