Sickle cell disease (SCD) sufferers in Kenya and six other countries in Africa will benefit from world-class care after drugmaker Novartis sponsored deployment of a mobile App to document and share the diagnosis of babies with the disease for overall management.
The sickle cell disease App, now activated in Kenya, Ghana, Liberia, Nigeria, Uganda, Tanzania and Zambia will have details of new-born babies screened and found to be suffering from SCD uploaded via the App for further clinical care.
Novartis sub-Saharan Africa Country President Racey Muchilwa said the partnership was intended to support provision of early diagnosis mechanisms which will inform mitigation measures.
“Sub-Saharan Africa has the highest SCD burden in the world and this partnership provides 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 Ms Muchilwa.
This comes after Novartis partnered with the American Society of Haematology (ASH) Consortium on Newborn Screening in Africa (CONSA), which is tasked with overseeing provision of standard-of-care practices for screening and early intervention therapies at participating institutions in the seven countries.
CONSA intends to screen between 10,000 to 16,000 babies per year in each country and provide clinical follow-up for babies living with SCD.
CONSA Project lead in Kenya Dr Bernard Awuonda hailed the New-born Screening App’s deployment saying while no country within Sub Saharan Africa had adopted universal new-born screening program, the Novartis-CONSA partnership will bring hope to babies and their parents.
“Approximately 300,000 children are born with sickle cell disease each year in the world, and around 75 percent of those are born in Sub Saharan Africa. Despite this, no country in our region has adopted a universal new-born screening program. Making agreements like this, Norvartis-CONSA partnership is even more crucial in bringing hope to babies and their parents,” he added.
“ASH is excited to partner with Novartis to expand its current new-born screening consortium to new areas, with the implementation of digital tools to collect vital information. As we learn together about the implementation of early diagnosis and treatment, we will be able to show national and international partners the value of this work in saving lives,” said ASH President Jane N. Winter.
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.