A campaign to bolster political will and engagement as well as advocate for financial resources for sickle cell disease prevention and control was launched at a side-event at the seventy-second session of the WHO Regional Committee for Africa (RC-72).
The campaign seeks to raise public awareness of the disease in schools, communities, health institutions and the media as well as advocate for strengthening health systems to provide quality services with equitable access to medicines and innovative tools.
Every day approximately 1 000 children are born with sickle cell disease in Africa. Unfortunately, more than half of these children will die before they reach the age of five usually from infections or severe anemia.
“We need to shine the spotlight on this disease and help improve the quality of life of those living with the disease,” said Dr Matshidiso Moeti, WHO Regional Director for Africa at the launch.
“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.
In many countries, 10%–40% of the population carries the sickle-cell gene resulting in an estimated sickle cell disease prevalence of 2%. More than 66% of the 120 million people affected worldwide by sickle cell disease live in Africa.
In 2019, over 38 400 deaths from sickle cell disease were recorded in the African Region representing a 26 % increase from 2000 says the WHO.
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 may 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 awareness raising, counselling and newborn screening by ensuring that programmes are decentralized and integrated with services being delivered at community and primary health care level.”
In the region, national policies and plans are inadequate while appropriately resourced health facilities, trained personnel, diagnostic tools and treatment are mostly available at secondary and tertiary hospitals.
Member states shared some best practices to tackle SCD that included new-born screening, health education, preventing infectious diseases such as malaria, good nutrition and adequate hydration. Ensuring access to blood transfusions and hydroxyurea therapy reduce hospital admissions and development of complications.
The Member States and partners called for strengthening collaboration and partnerships coupled with research and increased investment to combat sickle cell disease in Africa.
This campaign is also supported by partners including the World Bank, the United States Department of Human and Health Services, Novartis Foundation, Global Blood Therapeutics and Sickle in Africa.
Delegates from Cameroun, Ghana and Uganda shared experiences with deploying strategies to tackle Sickle-Cell Disease.
Suggested best practices included integration of sickle cell disease care with other health programmes; providing new-born screening for sickle cell disease at primary health care level; taking advantage of existing funding mechanisms to include sickle cell disease interventions; as well as strengthening coordination and building partnerships.
Sickle cell disease is an inherited blood disorder that shortens red blood cell survival, causing anemia. It is the most prevalent genetically acquired disease in the WHO African Region.