Novartis is planning to launch an app that will document and share the diagnosis of babies with sickle cell disease in the country.
Novartis recently announced its partnership with the American Society of Hematology (ASH) to provide six additional African nations with technology that is already being used in Ghana.
“Sub-Saharan Africa has the highest SCD burden in the world and this partnership is a testament to our long-standing commitment to provide a comprehensive approach to disease management that encompasses early intervention strategies, such as screening and diagnosis; follow-up treatment such as Hydroxyurea; research to investigate new treatments; and education and advocacy to improve access to existing therapies,” said Racey Muchilwa, Country President and the Head of Novartis sub-Saharan Africa.
“Approximately 300,000 children are born with sickle cell disease each year, and around 75% of those are born in Sub Saharan Africa,” noted Dr. Bernard Awuonda, Consultant Paediatrician and Consortium on Newborn Screening in Africa (CONSA) project lead in Kenya. “Despite this, no country in our region has adopted a universal newborn screening program, making agreements like this all the more crucial in bringing hope to babies and their parents,” he added.
The partnership with ASH’s Consortium on Newborn Screening in Africa (CONSA) will provide standard of care practices for screening. It will come with early intervention therapies at participating institutions in seven countries: Ghana, Kenya, Liberia, Nigeria, Uganda, Tanzania and Zambia.
CONSA screens 10,000 to 16,000 babies per year in each country and provides clinical follow-up for babies living with SCD1. The app will be used to collect and store data including screening results and medical histories for those people diagnosed with SCD. It has the benefit of tracking patients and migrating them to clinical enrollment for further care.
The app allows offline data collection when internet connections are down, and then syncs the data once the connection is restored. In addition to screening, access to timely treatment is also critical. Hydroxyurea (HU), the current global standard of care for SCD, will be made available in more facilities participating in CONSA.
The Novartis Africa Sickle Cell Disease program is implemented through public-private partnerships with local governments, as well as collaborations with universities, patient groups, professional societies and other organizations.
Sickle Cell Disease (SCD) is an inherited blood disorder which is life threatening and causes suffering throughout the lives of many of those affected, including acute painful episodes, anaemia, organ damage, chronic pain, and fatigue. Over 300,000 children are born with SCD in Africa every year; more than half do not survive past their fifth birthday. A recent study demonstrated that large-scale, universal screening could save the lives of up to 10 million children globally.