The Executive Director of the Ghana Foundation for Sickle Gene Action, Victoria Awo Twumasi, has called on President John Dramani Mahama to include full coverage of sickle cell disease treatment under the Mahama Care initiative and the National Health Insurance Scheme.
She made this call during a free sickle cell disease screening exercise organized by the Foundation for over 400 pupils of Akweibu Basic School in Dansoman, in the Ablekuma West Municipality of the Greater Accra region. Supported by the municipality’s educational directorate, the exercise was part of the Foundation’s activities to mark this year’s World Sickle Cell Day.
“On behalf of the Sickle Cell Disease Community, mothers and families caring for children and individuals diagnosed with the disease, I’ll plead with our President, Mr. John Dramani Mahama and his administration to adopt treatment for sickle cell disease under the Mahama Care initiative, to help reduce the financial burden of families impacted by the disease”, she said.
World Sickle Cell Day is observed globally on 19th June, following its establishment by the United Nations in 2009. On World Sickle Cell Day several organizations, such as the Ghana Foundation for Sickle Gene Action, organize several activities to educate and raise public awareness about sickle cell disease. This year’s theme, “Global Action, Local Impact: Empowering Communities for Effective Self-Advocacy,” highlights the need to elevate the voices of those affected by the disease.
Prior to the screening exercise, the Foundation organized an educational session for the students to explain sickle cell disease to both students and staff. Mrs. Mary Lamptey, National Nurse Coordinator, Newborn Screening for Sickle Cell Disease, educated the pupils on the disease.
She explained that “sickle cell disease can cause pain crisis for persons living with the disease due to the abnormal hemoglobin affecting red blood cells to become rigid and stuck in small blood vessels, which blocks blood flow”.
Mrs. Lamptey, who is also a board member for the Ghana Foundation for Sickle Gene Action, noted that there is treatment for the disease and thus, one can live a normal life if diagnosed early for early treatment. “There are specialized clinics established in selected health facilities across the country that offer special care for persons diagnosed with the disease”. She further advised the students to encourage their family members who have been diagnosed of the disease to obey instructions from their healthcare providers to help them live healthy lives.
The Acting Medical Superintendent of the Dansoman Polyclinic, Dr. Naa Kowah Coker, noted that “limited screening is undermining efforts to combat sickle cell disease in Ghana”. She commended the Ghana Foundation for Sickle Gene Action for making efforts in helping communities to close the gap in screening for sickle cell disease.
Further, the Ablekuma West Municipal Director of Health Services, Dr. Valarie Osei Tutu, emphasized that beyond raising awareness, early detection and tackling stigma were critical in the fight against sickle cell disease.
Mrs. Janet Ohene-Frempong, wife of the late Professor Kwaku Ohene-Frempong (a renowned Hematologist), advised the students to stop stigmatizing other students diagnosed with sickle cell disease, but rather support them. “I encourage you to learn more about sickle cell disease to be able to support your friends who have been diagnosed with the disease. Play together, learn together, and help them when you see them in pain”.
The late Prof. Ohene-Frempong introduced Newborn Screening for SCD in Africa, with Ghana as the first country to implement the program. He also led in the Ghana – Norvatis partnership that sponsored Hydroxyurea medication for sickle cell disease treatment in Ghana between 2019 and 2021.
The Foundation donated writing and learning items to the pupils. The event also witnessed patients and families who shared emotional stories while advising the students on the need to know their genotype.
