The American Society of Hematology (ASH) has partnered with African-based hematologists and allied health professionals to launch the ASH Consortium on Newborn Screening in Africa (CONSA), an international network that seeks to demonstrate the benefits of newborn screening and early interventions for children with sickle cell disease (SCD) in sub-Saharan Africa.
According to the World Health Organization (WHO), more than 300,000 babies are born with SCD every year in sub-Saharan Africa, but many do not live past the age of five because they lack access to testing, comprehensive clinical care, and early intervention programs. To help change this trajectory, CONSA has launched newborn screening programs in seven countries: Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda, and Zambia. Through the leadership of hematologists and public health officials in these countries, CONSA introduces standard-of-care practices for screening and early intervention therapies (such as antibiotic prophylaxis and immunizations) for SCD.
The goal of the consortium is to screen 10,000 to 16,000 newborns in each country every year for the next five years, and to research the long-term benefits of newborn diagnosis and early clinical interventions. Once screened, newborns found to be living with SCD will enter clinical programs that offer access to necessary medications, education on SCD care for their families, and monitoring of their health needs up to the age of five. Hematologists and public health officials participating in the consortium have mobilized networks of screening laboratories, SCD or pediatric hematology clinics, teaching hospitals, universities, and satellite clinics to screen babies and provide clinical services. To date, more than 11,000 newborns have been screened.
“Our aim in partnering with sickle cell experts who are based in Africa as well as collaborating with the public sector is to prioritize government capacity and funding to increase the number of infants being screened for SCD across the region,” said Alexis Thompson, MD, MPH, member of the ASH CONSA Steering Committee, former ASH president, and head of the Hematology Section at the Ann and Robert H. Lurie Children’s Hospital of Chicago, during a virtual press conference. “We hope that the successful launch of these screening programs and treatment protocols will demonstrate the feasibility of this model and will encourage other nations with a high burden of SCD to take similar steps to diagnose and treat SCD,” she said.
“Saving the lives of children is a priority in all our countries,” said Kwaku Ohene-Frempong, MD, president of the Sickle Cell Foundation of Ghana and national coordinator for CONSA. “Newborn screening for SCD saves lives of children even before the parents know they have SCD. And that is why we need to continue to promote newborn screening to our government leaders,” he said. “An organization like ASH has a voice that can be heard very loudly, compared to our voices within our own countries. And that’s why we appreciate the CONSA collaboration with ASH.”
ASH will continue working in partnership with local and national governments, and industry partners like PerkinElmer and Novartis, to provide resources to ensure the long-term sustainability of screening and early intervention efforts and increase hematology capacity throughout sub-Saharan Africa.
Learn more about this and other ASH global initiatives at hematology.org/global-initiatives.