Africa carries the world’s sickle cell burden — and largely suffers it in silence. Eight in 10 people living with the disease are on this continent, with 400,000 children born into that reality every year. Yet for all its scale, sickle cell remains one of Africa’s most neglected health crises.
More than half of those born with it will not live to see their fifth birthday — most from infections that basic care could have prevented. In several African countries, it kills more children than malaria.
Yet for years, it wasn’t even recorded as a distinct cause of death in national or World Health Organisation (WHO) data. A disease that goes uncounted goes unfunded — and sickle cell has paid that price for far too long.
That is beginning to change. In May, African Union member states validated a continental sickle cell plan through Africa CDC, covering screening, diagnosis, treatment and regional care capacity.
Almost simultaneously, the WHO published its first consolidated clinical guidelines for managing the disease in children and adolescents. Political direction and clinical guidance, arriving together: a rare alignment worth watching.
For the first time, Africa has both a strategic framework and a clinical standard—and crucially, they point in the same direction. Two themes run through both and define the practical work ahead.
The first is early diagnosis. Both documents place newborn screening at the front of the response, for a straightforward reason: outcomes depend heavily on how early the condition is caught.
Once identified, established interventions — penicillin prophylaxis, pneumococcal vaccination—substantially reduce early mortality. A child whose condition goes undetected is typically diagnosed only during a serious crisis years later, by which point preventable harm has often already occurred.
The second is blood. Several of the most dangerous complications of sickle cell — severe anaemia, acute chest syndrome, stroke — are managed with transfusion or red blood cell exchange. Because the disease is itself a disorder of the blood, the reliability of the blood supply determines whether a child survives an acute episode, and in the case of stroke, whether lasting disability is prevented.
The progress these two documents represent is real. But it is worth being clear about what policy can and cannot do. A plan does not by itself screen a newborn.
A guideline does not place a unit of safe blood in a district hospital. In most settings, the central difficulty is connecting the parts. Screening, treatment and blood supply are commonly managed separately, by different actors, with weak links between them, and patients and families are left to navigate the gaps. The limiting factor is fragmentation, not the absence of capability.
This is the problem the IMARA Sickle Cell Framework is designed to address. It is not another policy document — the continent does not need one — but an implementation programme built around the same priorities the continental plan and WHO guidelines identify: early identification, a reliable blood supply, and the continuing care that must follow.
Developed by Terumo BCT with the World Coalition on Sickle Cell Disease, IMARA was shaped through a consensus process involving 39 experts across Kenya, Uganda and Côte d’Ivoire, and is being delivered in partnership with ministries of health, national blood services and local clinical institutions. The name is the Kiswahili word for strong—reflecting the intention to strengthen the whole sequence of care, not any single part of it.
There is good reason for confidence. In the United Kingdom, where care is well coordinated, median survival for sickle cell patients has risen to around 67 years.
The treatments are known and effective. The unresolved question has been whether they can be organised around the patient in the settings where most people with the disease actually live.
On World Sickle Cell Day on Friday, the IMARA framework launches in Kenya and Uganda. The policy direction is now in place. The task ahead is to deliver on it.
Eyong Ebai is the Managing Director of Terumo Blood and Cell Technologies in Africa
