2. Newborn Screening (NBS) and Sickle Cell Clinics – Crucial for Saving Lives

Ghana’s Groundwork for Newborn Screening (1992-2022)

• In 1989/90, Prof. Kwaku Ohene-Frempong, MD, then Associate Professor of Pediatrics, University of Pennsylvania, Attending Hematologist, and Director, Comprehensive Sickle Cell Center, Children’s Hospital of Philadelphia, and a son of Ghana, returned to Ghana.

• He returned to meet with officials of the Ministry of Health, Korle Bu Teaching Hospital, and Noguchi Memorial Institute for Medical Research (Noguchi). The subject was “Newborn Screening for Sickle Cell Disease in Ghana”.

• The project was a collaborative effort of the Comprehensive Sickle Cell Center of the Children's Hospital of Philadelphia, University of Pennsylvania, Noguchi Memorial Institute for Medical Research (University of Ghana), School of Medical Sciences (Kwame Nkrumah University of Science and Technology), Komfo Anokye Teaching Hospital the Ministry of Health of Ghana.

• Prof. Ohene-Frempong was the Principal Investigator of the research grant and Prof. Francis K. Nkrumah of Noguchi was the Co-Investigator and overall supervisor of the Ghana component of the project.

• With this study, the team established the need for and the feasibility of establishing a national newborn screening programme adapted to the needs of sub-Saharan Africa. The study was funded by a U.S. National Institutes of Health (NIH) 5-grant through the Comprehensive Sickle Cell Program at the Children’s Hospital of Philadelphia.

• A Sickle Cell Clinic was opened in December 1992 with 10 patients, in preparation for the launching of the Newborn Screening Study.

• At the conclusion of the NIH-funded project in March 2008, over 255,000 babies had been screened and over 4,500 of them had been diagnosed with SCD.

• Of those, just over 3,500 had been located and enrolled for comprehensive care.

• The study demonstrated that sickle cell disease did, in fact, exist in Ghana and that several thousand individual Moms could be given hope that their precious babies could stay alive and receive treatment in a clinic designed for their care.

• Prof. Ohene-Frempong formed and registered the Foundation as a Non-Governmental Organization (NGO), in 2004, to advocate for and lead the efforts to provide evidence-based care for persons living with sickle cell disease in Ghana and in sub-Saharan Africa.

The Sickle Cell Foundation of Ghana became the local institutional administrator for the pilot newborn screening project.

With the anticipated April 2008 ending of the US NIH support for the NBS project, the Foundation presented proposals to the Ministry of Health for the national scale-up of Newborn Screening Programme.

In 2008, President of Ghana inducted Prof. Ohene-Frempong into the Order of the Volta for his work in developing a newborn screening program for SCD.

Ghana’s Minister of Health launched the National Newborn Screening Programme for Sickle Cell Disease.

Ghana’s Minister of Health inaugurated the Newborn Screening Technical Advisory Committee charging it with the responsibility of drafting a Newborn Screening Policy for Ghana and a detailed plan for implementation of newborn screening in Ghana.

The National Newborn Screening Programme, in partnership with the Regional Directorates of Health Services, Ghana Health Services, conducted Regional Training Workshops. The results of those workshops informed the development of guidelines for managing SCD in Ghana, as well as the design of training programmes for health workers about newborn screening for sickle cell disease.

The Ministry of Health and the Foundation signed a Memorandum of Understanding (MOU), appointing “the Foundation as the National Coordinating Agency for the National Newborn Screening NNSP-SCD for Sickle Cell Disease”. The MOU further stated that, “the Ministry shall consider the Foundation as one of its Agencies under the Public-Private Partnership which is defined as the process through which the Ministry partners Private Institutions for the provision of services in the health sector.”

The Newborn Screening Technical Advisory Committee presented its “Draft Policy on Newborn Screening and a Detailed Plan for the National Newborn Screening for Sickle Cell Disease” to the Ministry of Health in November. The Plan included a 5-year scale-up of the pilot project to cover all babies born in Ghana by December 31, 2016, making newborn screening a national policy in Child Care Planning.

With support from the Ghana National Petroleum Corporation (GNPC), the US Centers for Disease Control and Prevention (CDC), and the Association of Public Health Laboratories (APHL) and, in collaboration with international experts from the United Kingdom and the US, the Foundation launched Ghana’s first genetic counselling and certification programme for sickle cell conditions, GENECIS-Ghana

The Sickle Cell Foundation of Ghana was contracted by CONSA to coordinate the project in Ghana within the Newborn Screening Program for Sickle Cell Disease. Prof. Ohene-Frempong became the National Coordinator for CONSA in Ghana.

In January-February 2016, with support from collaborators in Brazil, the Foundation co-sponsored the visit of two senior hemoglobin laboratory technologists Brazil to train a total of 12 Ghanaian laboratory technologists working at Noguchi and KATH on isoelectric This created a pool of well-trained technicians to substitute for the regular ones whenever necessary.

In January-February 2016, with support from collaborators in Brazil, the Foundation co-sponsored the visit of two senior hemoglobin laboratory technologists Brazil to train a total of 12 Ghanaian laboratory technologists working at Noguchi and KATH on isoelectric This created a pool of well-trained technicians to substitute for the regular ones whenever necessary.

Thanks to Professor Ohene-Frempong’s unwavering efforts, and despite struggles with funding, by the end of 2016, the National newborn Screening Programme for Sickle Cell Disease was screening an approximate average of 25,000 babies at 39 sites. At that point, the only funding available for screening newborns was coming from external sources.

In 2012, the Newborn Screening Program for Sickle Cell Disease organized a meeting of experts to develop Guidelines for Management of Sickle Cell Disease. The Guidelines, when completed and reviewed, were intended to be used in the training of treatment centres for sickle cell disease that were being developed throughout the country in preparation for the national scale-up of NBS. The drafting of Ghana Guidelines, developed for five levels of health care institutions and for Home, were completed in 2017. With support from a new Novartis, the Guidelines were to be tested in 2020-2021.

In 2017, Pfizer, in a partnership with Hospital for Sick Children (Toronto, Canada), led by Prof. Isaac Odame, Director, Division of Haematology, Departments of Medicine and Paediatrics, University of Toronto, Medical Director, The Global Sickle Cell Disease Network, the Hospital for Sick Children, provided funding to initiate NBS for SCD at KBTH. The project was conducted under the National newborn Screening Program for Sickle Cell Disease.

In 2017, the Foundation requested assistance from Novartis to develop a mobile Application for management of data collected in NBS. The App, first of its kind globally, was designed by Dimagi (USA) on its CommCare platform based on the Ghana NBS Database designed by Prof. Kwaku Ohene-Frempong, the President of the Foundation, and funded by Novartis. The App was in use at every screening site.

The Clinton Health Access Initiative in Ghana (CHAI-Ghana), in partnership with the Sickle Cell Foundation of Ghana, was awarded a grant from the Bill and Melinda Gates Foundation in August 2020 to embark on a project entitled, “Closing the Loop in Sickle Cell Disease in Ghana through Enhanced Newborn Screening and Treatment “.

As of May 2022, there were 24 Hospitals for the National Newborn Screening Programme Across Ghana (NNSP-SCD)

SGAF Groundwork Image 1
SGAF Groundwork Image 2
Source of Photos: RN Mary Lamptey

From 2004, when Prof. Ohene-Frempong, MD founded the Sickle Cell Foundation of Ghana,
until his untimely passing in 2022, the Foundation was the leading advocate for
the life-saving practice of screening newborns for sickle cell disease
in the cities and in the rural areas all across Ghana.