The wife of world-renowned expert and advocate of sickle cell disease, Mrs. Janet Ohene-Frempong, has donated items worth thousands of Ghana cedis to two sickle cell clinics at two health facilities in Ghana.
The facilities are the Komfo Anokye Teaching Hospital (KATH) and the Greater Accra Regional Hospital (GARH). Items presented include stationery and some refreshment for the children attending the clinic. The donation was in honour of her late husband, Professor Kwaku Ohene-Frempong. It is also her contribution to the sickle cell community to commemorate World Sickle Cell Day 2023.
World Sickle Cell Day (WSCD) is marked on June 19 every year ever since it was officially designated by the UN in December 2008. It was first commemorated in June 2009 to increase public knowledge and understanding of sickle cell disease and related conditions, and the challenges experienced by patients, their families, and healthcare providers.
On WSCD and within June each year, individuals, groups and organisations organise activities across the world to give hope to persons living with the disease. One such individual who has impacted many lives in the sickle cell community nationally and globally is the late Prof. Ohene-Frempong.
Mrs. Ohene- Frempong revealed that: “Throughout his years, Prof. Ohene-Frempong advocated for quality healthcare services for persons living with sickle cell disease in Ghana. It is based on this that I celebrate him as the world celebrates World Sickle Cell Day”.
Speaking on the theme ‘Support for Sickle Cell Warriors – In Honour of Prof. Kwaku Ohene-Frempong’, Mrs. Ohene-Frempong, who is also the Board Chair of Sickle Gene International Foundation in the USA, explained: “My husband and I have known the challenges and the pain of having to live with sickle cell disease. Our son, Kwame, was born with it in May of 1972. From May of 1972 until May of 2022, when my husband passed away, he devoted 50 years of his medical career to keeping as many people with sickle cell disease alive as possible.
“Prof. Ohene-Frempong is no longer here among us. But I am. And I will work along with many others to see that persons living with sickle cell disease get the quality of care they deserve.
“With screening for early detection and with the provision of affordable hydroxyurea and other disease-modifying medications, we can make life better for thousands of people. This, in turn, can give people hope when a safe, accessible and affordable cure becomes available. Meanwhile, let us treasure and celebrate each precious life.”
Madam Awo Twumasi, a parent of a teenager with sickle cell disease shared her experience with Prof. Ohene-Frempong: “KOF’s legacy of work, dedication and passion lives on, putting a smile on a child’s face through this donation to the Sickle Cell Association of GARH. These books, colouring materials, and items will go a long way to minimise the stress in children who might be in distress or experiencing an SCD crisis while visiting the SCD clinic”.
In addition, Madam Awo, who is also the President of the Sickle Cell Association of Ghana, Greater Accra Regional Hospital Chapter, said: “On this World Sickle Cell Day, We’re reminded of KOF’s tireless body of work to improve the quality of lives of people with Sickle Cell Disease. His motivation reaffirms our commitment to stay on the course of improving the lives of people with SCD by keeping the flame alive through the advancement of newborn screening in Ghana and strengthening our partnerships with Global healthcare organisations to make available the best treatment therapies like Hydroxyurea and related options to people with sickle cell disease.
Prof. Ohene-Frempong was well known in the global sickle cell disease community for his tireless efforts in advocating for persons living with sickle cell disease. He brought hope to many in the sickle cell disease community, especially in his homeland Ghana. His vision was to get every child in Ghana screened at birth and if diagnosed positive, start early treatment to live a full and healthy life.
Popularly known in the sickle cell community as KOF, Prof. Ohene-Frempong introduced to Africa and Ghana the method of newborn screening in sickle cell disease, which has and continues to benefit thousands of families with sickle cell disease.
Not only did he introduce and led in the implementation of newborn screening for sickle cell disease in Ghana. Prof Ohene-Frempong, through his long history with the Sickle Cell Disease Association of America (SCDAA), developed a relationship with Novartis, which resulted in the implementation of Hydroxyurea Therapy for a large number of persons with sickle cell disease in Ghana and the establishment of 12 new Sickle Cell Disease Treatment Centres in Regional Hospitals in Ghana.
He was the President of the Sickle Cell Foundation of Ghana and the National Coordinator of the Newborn Screening Programme for Sickle Cell Disease. He was an Emeritus Professor of Paediatrics at the University of Pennsylvania and Director Emeritus of the Comprehensive Sickle Cell Center at CHOP. He was a founding member of the Global Sickle Cell Disease Network, national coordinator for the American Society of Hematology Consortium on Newborn Screening in Africa, and Chief Medical Officer, Board of Directors Chairman, and Board Member Emeritus of the Sickle Cell Disease Association of America.
Among others, he served as a member of the following institutional boards: Newborn Screening Technical Advisory Committee, Dept. of Health, Pennsylvania; Blood Products Advisory Committee, Food and Drug Administration, USA; Recombinant DNA Advisory Committee, National Institutes of Health; Chairman, Executive Committee, National Advisory Board, National Coordinating and Evaluation Center, Sickle Cell Disease and Newborn Screening Program, Health Resources and Services Administration, U.S. Department of Health and Human Services; Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children; and Secretary of Health, U.S. Department of Health and Human Services.
