Consortium Initiates Newborn Screening Program on Sickle Cell Disease in Nigeria and Ghana
Consortium on Newborn Screening in Africa (CONSA) aims to strengthen sickle cell disease (SCD) care in sub-Saharan Africa, where SCD is endemic, in partnership with governments and health care clinics
(WASHINGTON, March 31, 2021) — Each year, more than 300,000 babies in sub-Saharan Africa are born with sickle cell disease (SCD), but many do not live past the age of five because they lack access to comprehensive care and early intervention programs. Today, the American Society of Hematology (ASH) announced that the ASH Consortium on Newborn Screening in Africa (CONSA), a consortium comprising ASH leaders, African hematologists, and international hematology experts, has launched SCD newborn screening programs in Ghana and Nigeria, an important first step toward expanding access to early intervention and comprehensive care across the region.
“As the world’s largest professional society of clinicians and scientists working to conquer blood diseases, ASH has an important role in improving access to SCD care throughout the world in collaboration with our partners,” said ASH President Martin Tallman, MD, of Memorial Sloan Kettering Cancer Center. “The start of CONSA newborn screening in Ghana and Nigeria is both an important landmark in this mission for ASH and its partners and a vital starting point for many future efforts. The success of these programs and the promise of progress in additional countries in the consortium will demonstrate the efficacy of this model and encourage other low-income nations to take similar steps to diagnose and treat SCD.”
Individuals with SCD suffer from acute pain episodes and chronic pain and may be affected by an array of other organ complications, which can cause disability or even death. If SCD is left undetected, individuals are likely to face worse health outcomes that are otherwise preventable with low-cost treatments.
In the United States and many other high-income countries, newborn screening for SCD is universal; however, newborn screening programs have not been widely implemented in Africa. In countries like Ghana and Nigeria, where SCD prevalence ranges from 2-4% of all newborns, a majority of infants are not screened due to limited government capacity and funding. CONSA aims to increase the region’s capacity for newborn screening and demonstrate the benefits of screening and early interventions for babies with SCD in sub-Saharan Africa, working in partnership with local governments to ensure the long-term sustainability of these efforts.
CONSA newborn screening programs have begun at 37 Military Hospital and Greater Accra Regional Hospital in Ghana and University of Abuja Teaching Hospital in Nigeria.
“We are delighted to have the support of the American Society of Hematology to extend newborn screening for SCD to two of our major hospitals in Accra. Children with SCD born at these two hospitals can now receive treatment that will extend their lives into adulthood,” said Professor Kwaku Ohene Frempong, MD, Ghana CONSA national coordinator and president of the Sickle Cell Foundation of Ghana. “Governments in sub-Saharan Africa need to follow the lead of CONSA and screen all babies for SCD. Newborn screening for SCD saves lives.”
Ghana and Nigeria are the first countries of seven represented in the consortium to launch their newborn screening protocols. 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 5.
“As mothers deliver their babies in hospitals or bring them to the clinic for their first vaccines, they will be offered the diagnostic screening,” said Professor Obiageli Nnodu, MD, Nigeria CONSA national coordinator and director of the Centre of Excellence for Sickle Cell Disease Research and Training at the University of Abuja. “Through such interventions, we aim to reduce under-5 mortality, support the achievement of Nigeria’s Sustainable Development Goals, and promote the quality of life for affected persons,” she said.
Five additional countries in the consortium – Kenya, Liberia, Tanzania, Uganda, and Zambia – are also preparing to launch screening programs in 2021. Like Ghana and Nigeria, these countries will mobilize screening laboratories, SCD or pediatric hematology clinics, teaching hospitals, universities, and satellite clinics to be able to screen 10,000 to 16,000 babies in each country per year for the next five years. Each nation will independently run and control their own protocols and data. ASH – in partnership with PerkinElmer, a company that produces screening technology – will support the efforts by providing resources for screening, offering information to strengthen screening infrastructure, and promoting data sharing in these countries.
CONSA stems from a multifaceted initiative ASH launched in 2016 to address the global burden of SCD. The ASH Sickle Cell Disease Initiative includes development of SCD clinical practice guidelines, expansion of education and training efforts, focused federal policy efforts, and establishment of the Sickle Cell Disease Coalition. In addition to these efforts, the ASH Research Collaborative (ASH RC) SCD Clinical Trials Network and Data Hub were developed with the mission to improve outcomes for individuals with SCD by expediting SCD therapy development and scientific discovery and facilitating innovation in clinical trial research. CONSA uses the Data Hub to store all data collected from the consortium.
The American Society of Hematology (ASH) (www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 60 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood (www.bloodjournal.org), the most cited peer-reviewed publication in the field, and Blood Advances (www.bloodadvances.org), an online, peer-reviewed open-access journal.
Leah Enser, American Society of Hematology