African Health ministers attending the World Health Organization’s 72nd Regional Committee for Africa in Lome, Togo, from 22 to 26 August, 2022, have decided to step up their efforts to improve sickle cell disease (SCD) awareness, prevention, and care in that continent, where most SCD patients reside.
This effort, backed by the African Regional Office of the World Health Organization (WHO), aims to curb SCD΄s toll in a region that has historically been hit hard by this blood disorder, yet receiving inadequate attention.
Ιn more detail, the campaign will seek to bolster political will and engagement as well as financial resources for sickle cell disease prevention and control across the region. It will also pursue to raise public awareness of the disease in schools, communities, health institutions and the media and advocate stronger health systems to ensure quality and uninterrupted services and equitable access to medicines and innovative tools.
Africa’s Hefty Sickle Cell Disease Burden
According to WHO, more than 66% of the 120 million people affected worldwide by sickle cell disease live in Africa.
Countries in Africa’s eastern and western regions, including Nigeria, Democratic Republic of the Congo, Ghana, Tanzania, Uganda and Kenya, have recorded the highest disease burden. Nigeria is the global hotspot of sickle cell disease.
“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,” said Dr Matshidiso Moeti, WHO Regional Director for Africa. “We need to shine the spotlight on this disease and help improve the quality of life of those living with it.”
Due to the absence of newborn screening programmes and surveillance across the region, there is a lack of accurate and reliable data on the disease. Additionally, data collection for sickle cell disease is not included in most national population-wide surveys. These data gaps have negatively impacted the prioritization and allocation of resources for the disease.
Beyond its public health impact, sickle cell disease also poses numerous economic and social costs for those affected and their families and can interfere with many aspects of patients’ lives, including education, employment, mental and social well-being, and development.
“We can no longer ignore the significant burden caused by sickle cell disease,” said Dr Moeti. “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.”
Partnerships Are Key in SCD Rates Reduction
Other efforts are also taking place to improve Africa’s SCD care. Last June, Novartis announced a partnership with the American Society of Hematology (ASH) to roll out an app in six sub-Saharan countries to track babies who are diagnosed with SCD through newborn screening.
In March 2022, 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, Dr Moeti is calling for increased investments and stronger collaborations and partnerships to help contain the tide of rising cases.
The new campaign is, in addition to WHO, supported by the U.S. Department of Health and Human Services, the World Bank, the Novartis Foundation, Global Blood Therapeutics, and Sickle in Africa.