The Consortium on Newborn Screening in Africa (CONSA) is 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.
ASH member and national coordinator of the CONSA network in Nigeria, Professor. Obiageli E. Nnodu (University of Abuja, Abuja, Nigeria), is a leading proponent of SCD intervention, research, and advocacy in Nigeria. A respected hematologist specializing in the diagnosis and treatment of bone cancer, Professor Nnodu turned her attention to SCD over ten years ago after learning more about the overwhelming burden of SCD on newborns in Nigeria. She serves as the director of the Centre of Excellence in Sickle Cell Disease Research and Training at the University of Abuja (CERSTA),Site Principal Investigator for the Sickle Pan African Consortium, and has been instrumental in developing the CONSA clinical protocols and implementation scheme. She has also led development of guidelines for SCD clinical care in Nigeria for individuals and healthcare providers at each level of the public healthcare system. Professor Nnodu has been a longtime champion for SCD screening and care, and the advancement of affordable methodologies that harness existing public health system models in Nigeria and West Africa. With CONSA, along with her dedicated colleagues in Abuja and Kaduna States, she has mobilized a network that will screen 16,000 babies per year and provide clinical interventions for SCD positive babies until the age of five. Here, she discusses how her years of direct action led to her involvement with CONSA, and shares some of the successes of the program thus far.
“Essentially, my decision to volunteer as a CONSA coordinator was shaped by years of effort at the institutional, national, continental levels with colleagues seeking to bring this fundamental evidence-based intervention for the control of SCD to the general populace. In terms of successes thus far, in the past year, we purchased three new electrophoresis systems for the Nigerian Network in Abuja and Kaduna States and trained staff on their use, and engaged stakeholders at the institutional, state, and federal levels. We also assembled the clinical networks in both sites, identified and hired key personnel, and obtained institutional review board approvals at the institutional and state levels. We carried out community engagement activities, entered into memoranda of understanding with ASH and relevant partner organizations, and finally, obtained approval for custom waivers for the reagents and consumables required for the program.
“This steady stream of action has strengthened the way we can respond to SCD in the region. Certainly, we gained experience in the use of the isoelectric focusing electrophoresis method for the diagnosis of SCD, as the cellulose acetate and high-performance liquid chromatography techniques were more common. And we also gained experience in working with policy makers at the state level to support the provision of interventions for screen-detected newborns. This compliments the current engagement with federal and local governments.
“Developmental projects involving a disease of high prevalence like SCD requires a multisectoral, multi-stakeholder approach. We are delighted to see the University of Abuja — the university of national unity, strategically located in the nation’s capital close to policy makers — at the forefront of this and other initiatives aimed at reducing the burden of SCD in the country. It has been a rewarding experience working with eminent colleagues in the ASH global hematology community over the past four years. On the ASH staff, Chase Willett and Andrew Zapfel have done admirable, painstaking administrative work in starting this process, launching it and going on to initiate successful implementation.”
HHS Office of the Assistant Secretary for Health Awards ASH Member and CONSA Volunteer Dr. Kwaku Ohene-Frempong
On October 15, 2020, the Assistant Secretary for Health, ADM Brett P. Giroir, MD presented the Assistant Secretary of Health Exceptional Service Medal to Professor Kwaku Ohene-Frempong, MD, recognizing him for his outstanding contributions on behalf of people worldwide living with sickle cell disease. The medal is awarded for exceptional achievement to the cause of public health and medicine and is the highest civilian award from the Public Health Service, though Professor “KOF” is the first “civilian” (non-US uniformed person) to receive the award A key leader of CONSA and national coordinator of the CONSA network in Accra, Ghana, Professor “KOF” has been a long-time champion for pediatric SCD patients in Africa and the United States.His leadership was instrumental in the development of newborn screening in Ghana, and he is a mentor to colleagues throughout Africa working to develop SCD newborn screening and care efforts. Dr. Ohene-Frempong is Professor Emeritus of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania and President of the Sickle Cell Foundation of Ghana. Please join us in congratulating Dr. Ohene-Frempong on this significant achievement.