By Gift Briton
With almost 14 million children expected to be born with Sickle Cell Disease (SCD) globally between 2010 and 2050 most of whom are expected to come from Africa, African health ministers have launched a campaign to increase awareness and bolster prevention and care in order to alleviate the burden caused by the disease.
The campaign, launched at a side-event on enhancing advocacy on sickle cell disease during the Seventy-second World Health Organization (WHO) Regional Committee for Africa, aims to shore up political will and engagement as well as financial resources for sickle cell disease prevention and control across the region.
It also seeks 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.
Speaking during the event, Dr Matshidiso Moeti, WHO Regional Director for Africa said, “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. We need to shine the spotlight on this disease and help improve the quality of life of those living with it.”
SCD, also referred to as sickle cell anaemia is an inherited blood disorder that shortens red blood cell survival, causing anaemia. Poor blood oxygen levels and blood vessel blockages in people with sickle cell disease can cause extreme pain in the back, chest, hands and feet as well as severe bacterial infections.
According to the organization, more than 66% of the 120 million people affected worldwide by SCD live in Africa with approximately 1000 children born with the disease every day in Africa, making it the most prevalent genetically-acquired disease in the region. Moreover, more than half of these children will die before they reach the age of five, usually from infection or severe anaemia.
In the African region, 38 403 deaths from sickle cell disease were recorded in 2019, a 26% increase from 2000. The burden of sickle cell stems from low investment in the efforts to combat the disease.
WHO notes that many public health facilities across the region lack the services for prevention, early detection and care for sickle cell disease. Inadequate personnel and lack of services at lower-level health facilities also hamper effective response to the disease.
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.
Furthermore, the organization point out that 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. 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,” said Dr Moeti. She also stressed the need for greater investment and stronger collaboration and partnerships to help stem the tide of rising cases of sickle cell disease in Africa.
Though some countries with high burden of the disease are already making significant progress in the fight against SCD including Cameroon which has integrated SCD and other health programmes, Ghana has rolled out funding for Hydroxyurea as well as new born screening through their National Health Insurance Authority and Uganda is also using the World Bank mechanism to fund SCD activities, however, Dr Moeti notes that only eight out of 23 high burden countries in the region, allocate funding from the annual state budget to SCD.