African health leaders have endorsed a new Continental Plan for Sickle Cell Disease (SCD) and Other Rare Blood Disorders, marking a significant step toward strengthening diagnosis, treatment, and long-term care for millions of people affected by the condition across the continent.
The plan was validated during the Technical Validation and Launch Workshop convened by the Africa Centres for Disease Control and Prevention (Africa CDC), bringing together health ministers, development partners, international agencies, and public health experts to coordinate a continent-wide response to one of Africa’s most pressing inherited health conditions.
The initiative builds on lessons from the American Society of Hematology’s Consortium on Newborn Screening in Africa (CONSA), which since 2020 has screened nearly 175,000 newborns and identified more than 2,500 cases of sickle cell disease, demonstrating that large-scale newborn screening programmes can be successfully implemented in African settings.
Speaking on the importance of translating policy into patient outcomes, physician-scientist and Associate Professor of Hematology at Kaduna State University, Dr. Livingstone Dogara, stressed that people living with sickle cell disease must be involved in designing and implementing programmes from the outset.
“First, people living with sickle cell disease must be part of the process, from the get-go, involving the people who have the disease, that feels it. It is important, it is key. Without this engagement, it becomes like one of those programmes that the specialists plan, but implementing it is not impossible. It may be a funded programme, but not implementable,” Dr. Dogara pointed out.
According to Dogara, initiatives developed without direct engagement from patients often struggle to achieve meaningful impact despite having technical and financial support. He also emphasized the need for national and subnational governments to participate throughout the development process rather than being consulted only after policies have been finalized.
The new strategy seeks to address a major public health challenge. More than 300,000 babies are born annually with sickle cell disease in sub-Saharan Africa, yet many are never diagnosed or receive appropriate treatment.
Experts estimate that between 400,000 and 500,000 affected births occur across Africa each year.
Evidence from the CONSA programme in Kaduna State has demonstrated that newborn screening services can be successfully expanded beyond tertiary hospitals into community-based healthcare settings. What began as a limited screening initiative has grown into a network of more than 20 screening clinics and five community-level care clinics providing services for children diagnosed through the programme.
Dr. Dogara noted that the establishment of local clinics has consistently attracted patients previously outside the healthcare system, revealing significant unmet demand for sickle cell services in underserved communities.
“Whenever we start a clinic, we begin to see babies outside, we start for the cohorts of newborn babies diagnosed through the CONSA programme, but we see the clinic overrun and overtaken by other people living with sickle cell disease, who did not have anywhere to go”, he stated.
“We’ve seen just eight clinics for screening, and now we have over 20 clinics for screening, and we have five clinics offering care at the community level for babies diagnosed through the CONSA program. We are seeing what we are doing on a scale of the project now. And we have seen that it’s actually a scalable programme,” he confirmed.
Health experts involved in the programme argue that integrating sickle cell services into existing primary healthcare systems offers the most sustainable pathway to expanding access. Historically, specialist sickle cell clinics have been concentrated in tertiary hospitals located far from rural populations, limiting access for many families.
Data from Kaduna State indicate that despite thousands of babies being born annually with sickle cell disease, an overwhelming majority had never attended a specialist clinic. This reality prompted efforts to decentralize services through primary healthcare facilities already equipped with trained personnel and community outreach structures.
The strategy also identifies workforce development as a critical priority. Programmes under initiatives such as ARISE have already begun training nurses and other healthcare workers through task-shifting models, enabling them to provide aspects of sickle cell care traditionally handled by specialists. Additional efforts are underway to develop multidisciplinary teams with expertise in related fields, including nephrology and cardiology.
Experts believe that early diagnosis and standardized care can significantly improve patient outcomes while reducing healthcare costs. Clinical experience from Kaduna suggests that standardized management approaches have contributed to a substantial reduction in hospital admissions related to sickle cell complications over recent years.
Data systems and patient registries are also expected to play a central role in the success of the continental strategy. According to Dogara, reliable registries are essential for measuring outcomes, informing policy decisions, and supporting advocacy for increased government funding and resource allocation.
“Without registry, we will not have data to work with, and we cannot be able to speak, and we cannot engage the government for budgetary advocacy,” he noted.
Nigeria’s Federal Ministry of Health is already exploring ways to integrate data generated through newborn screening programmes into a centralized national platform, an approach that experts believe could strengthen coordination and improve monitoring of sickle cell interventions.
“We need to start working with the primary healthcare development board. Right from day one, we work with them, and they allow us to sue their facilities, and we have been using their facilities for screening and even starting the clinics now, and it is work, At the national level, integration is also happening through data systems: In terms of data, CONSA work is giving us space to recognise data for newborn screening, but the Federal Ministry of Health in Nigeria is actually trying to integrate, to see how this pocket of activities go, you know, have coming and have one centralised, a unifying platform, to engage and discuss,” he said.
The newly endorsed Africa CDC strategy places strong emphasis on early diagnosis, integrated care delivery, workforce development, data systems, and sustainable financing, reflecting lessons learned from successful pilot programmes across the continent.
Health leaders say the challenge now lies in ensuring that the framework moves beyond policy discussions and delivers measurable improvements in diagnosis, treatment access, and survival outcomes for people living with sickle cell disease across Africa.
By: Robert Kwaku Annor
