African Health Ministers Step Up Efforts to Improve SCD Care

The new campaign aims to heighten awareness, prevention, and quality of life

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by Mary Chapman |

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A cohort of African health ministers, with support from the African regional office of the World Health Organization (WHO), has opened a campaign to improve sickle cell disease (SCD) awareness, prevention, and care in that continent, where most SCD patients reside.

The effort seeks to curb the blood disorder’s toll in a region that has historically been hit hard, yet receives inadequate attention. The campaign was announced at an event to enhance SCD advocacy during the 72nd session of the WHO Regional Committee for Africa.

Specifically, the campaign hopes to strengthen SCD engagement, bolster the region’s political will to fight the disease, and increase sickle cell funding across the region. It also seeks to heighten public awareness in schools, communities, and healthcare institutions and to ensure quality and uninterrupted healthcare services and equitable access to treatments and innovative tools.

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“Most African countries do not have the necessary resources to provide comprehensive care for people with sickle cell disease despite the availability of proven cost-effective interventions for prevention, early diagnosis and management of this condition,” Matshidiso Moeti, WHO regional director for Africa, said in a press release.

“We need to shine the spotlight on this disease and help improve the quality of life of those living with it,” added Moeti, who holds a degree in medicine and a master’s degree in public health.

Living with sickle cell disease in Africa

Some 120 million people globally are thought to live with sickle cell. Of them, more than 66% live in Africa, where about 1,000 children are born with the disease daily. More than half of these children die before age 5, usually from infection or severe anemia. In fact, SCD is the continent’s most prevalent inherited disorder.

In 2019, for example, 38,403 people in Africa died from the disease — a 26% increase from 2000. Still, efforts to mitigate SCD’s burden continue to be hamstrung by insufficient funding and, where it exists, generally inadequate sickle cell care at public health facilities, which often lack SCD-trained healthcare professionals. As a result — and combined with relatively low disease awareness — early detection and prevention are negatively affected.

Still, such data are lacking because of the absence of newborn screening programs and monitoring across the continent. To compound matters, most of the continent’s surveys of the population don’t seek SCD data, which negatively affects disease prioritization and resource allocation.

“We can no longer ignore the significant burden caused by sickle cell disease,” Moeti said. “We must do more to improve access to treatment and care, including counselling and newborn screening by ensuring that programmes are decentralized and integrated with services delivered to communities and at primary health care level.”

Efforts are afoot to improve Africa’s SCD care. In June, for example, Novartis announced a partnership with the American Society of Hematology to roll out an app in six sub-Saharan countries to track babies who are diagnosed with SCD through newborn screening. Such tracking means that babies can receive a clinical referral sooner and have timely access to care.

And in March, a team of international scientists received a $3 million grant from the National Institutes of Health to sequence the genome — the entire genetic code — of children with SCD in Ghana.

Still, Moeti is calling for increased investments and stronger collaborations and partnerships to help stem the tide of rising cases.

In addition to WHO, the new campaign is supported by the U.S. Department of Health and Human Services, the World Bank, the Novartis Foundation, Global Blood Therapeutics, and Sickle in Africa.