in 2021, 405,000 children in Africa were born with sickle cell disease, a 27 per cent rise from 2000
The World Health Organisation (WHO) says African countries must ramp up awareness and bolster prevention and care to curb the burden of Sickle Cell Disease (SCD) on the continent.
The Medical Officer for Integrated Package Delivery, WHO Africa Regional Office, Antonio Armando, said this during the region’s webinar on Thursday to commemorate the 2025 World Sickle Cell Awareness Day.
The day is marked annually on June 19 to increase public knowledge and understanding of sickle cell disease and the challenges experienced by patients, their families, and caregivers.
The theme for the 2025 celebration is: ‘Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy’.
Speaking on the topic “Preventing and Controlling SCD and the WHO Response”, Mr Armando noted that sickle cell is the most prevalent genetically acquired disease in Africa.
He said in 2021, 405,000 children in Africa were born with sickle cell disease, a 27 per cent rise from 2000.
“In Africa, the burden of SCD cases was 3.39 million in 2000, rising to 5.68 million cases in 2021, representing 73 per cent of the 7.74 million people affected worldwide,” he said.
“Africa has the highest mortality of SCD, causing 29,535 deaths in 2021, about 89 per cent of the global SCD-associated deaths, and more of them occur in children.”
According to him, 50 per cent to 90 per cent of those children die before age five.
On critical interventions for prevention and control of SCD, Mr Armando underscored awareness and education as the primary intervention for preventing SCD.
He noted that early diagnosis through a newborn screening programme was crucial for managing SCD and reducing mortality.
According to him, vaccination against pneumococcal infections and prophylactic antibiotics help prevent infections in children with SCD.
SCD is an inherited blood disorder that affects haemoglobin, the protein that carries oxygen through the body.
In someone with SCD, red blood cells become hard and sticky and get stuck in small blood vessels, resulting in pain and other serious complications.
SCD treatment
Mr Armando noted that hydroxyurea medication is an intervention that has been shown to reduce the frequency of pain episodes and other complications.
“Bone marrow transplant is currently the only curative treatment, although it is limited by donor availability and high costs,” he said.
He emphasised that Somatic Gene Therapy would be one of the most exciting practices of genetic medicine in Africa and was primed to offer a “new life” for persons living with SCD.
Mr Armando, however, lamented that access to proven interventions and treatment remains a challenge, particularly for these vulnerable groups.
He noted that the National guidelines for SCD management were indicated to be available only in 11 member states, and availability of hydroxyurea was reported in 11 member states.
“Nigeria is manufacturing this medication,” he said.
He regretted that no country on the continent implemented SCD screening as a national strategy.
However, Mr Armando disclosed that 14 countries had subnational-level screening programmes, including Nigeria, Ghana, Liberia, Tanzania, Zambia, Uganda, Benin, Burkina Faso, Democratic Republic of Congo, Gabon, and Mali.
According to him, the prevention, diagnosis, and management of SCD are often centralised in secondary and tertiary health facilities.
Regarding resource allocation for the prevention and control of SCD, he said only 50 per cent of the 23 high-burden countries implement national SCD control programmes.
He disclosed that eight member states allocated funding from their annual budget for the promotion of SCD and newborn screening or mass screening for SCD – listing the countries as Nigeria, Kenya, Niger, Burkina Faso and Liberia.
On the WHO response, Mr Armando noted that the agency is utilising the PEN Plus strategy to provide essential non-communicable disease services to alleviate the burden of unaddressed and severe NCDs among populations.
He said this was done through decentralised, outpatient services and integrated case management in the African Region.
Mr Armando emphasised that priority actions should be given to strengthen governance and leadership, prioritise SCD and improve health system capacity.
He said: “Others include establishing National Newborn Screening Programming to reduce mortality, increase access to Hydroxyurea to reduce morbidity and mortality.
“Also, demand creation for use among clinicians and manufacturing at a lower cost for the region.”
He stressed the importance of establishing a sustainable financing mechanism for SCD in the region.
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Similarly, Collins Boakye-Agyemang, Communication Officer, WHO Regional Office for Africa, stressed that the media played a critical role in preventing and controlling SCD by amplifying the condition in their reports.
Mr Boakye-Agyemang said the mortality statistics are equivalent to 80 lives lost every day in Africa to SCD, noting that this is an emergency.
“We want to collaborate with the media to bring SCD issues to the fore to drive action, influence policy shift and accountability,” he said.
Also speaking, Ayuk Anne-Chantal, communications specialist and Founder, A&A Consulting, called for increased access to treatment, and ending stigmatisation and discrimination against SCD warriors.
Ms Anne-Chantal, who is also an SCD warrior, shared that she had lived with the condition for over 45 years, calling for a shift to see SCD as an economic crisis that hurts nations.
NAN reports that African SCD warriors shared their experiences, including Nigerian musician Adekunle Gold.
Nigeria carries the highest burden of SCD globally, with approximately 150,000 newborns affected annually