Adopt treatment of sickle cell disease under Mahama Care Initiative - Advocacy NGO appeals
The Executive Director of the Ghana Foundation for Sickle Gene Action, Victoria Awo Twumasi, has appealed to President John Dramani Mahama to include full coverage of sickle cell disease (SCD) treatment in the Mahama Care initiative and the National Health Insurance Scheme.
She said that would help ease the financial burden the disease placed on patients.
Ms Twumasi made the call when the Foundation, a non-profit and SCD advocacy group in Ghana, organised an awareness event and a free SCD screening exercise for over 400 students of Akweibu Basic School in Dansoman in the Ablekuma West Municipality in the Greater Accra Region.
Supported by the municipality’s education directorate, the exercise was part of the foundation’s activities to mark this year’s World Sickle Cell Day.
Sickle Cell Day
World Sickle Cell Day is observed globally on June 19 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.
Ms Twumasi said unknown to most people, SCD management placed enormous financial burden on patients and caregivers, forcing many of them to skip seeking the needed medical care.
She said with many people impacted by the disease, either as patients or caregivers unable to foot the medical bills, they were unable to enjoy the healthy lives that proper medical care could offer.
“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 of sickle cell disease under the Mahama Care initiative to help reduce the financial burden of families impacted by the disease”, she said.
Exercise
Prior to the screening exercise, the foundation organised an educational session for the students to explain sickle cell disease to both students and staff.
The foundation also donated writing and learning items to the pupils.
As part of the campaign, some patients and families shared emotional stories, and advised the students on the need to know their genotype.
The National Nurse Coordinator, Newborn Screening for SCD, Mary Lamptey, educated the students on the disease, how people got it and how it affected people.
Mrs Lamptey who is also a board member of the Ghana Foundation for Sickle Gene Action, noted that there was treatment for the disease and thus, one could live a normal life if diagnosed early for early treatment.
“There are specialised 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 had 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 was undermining efforts to combat sickle cell disease in Ghana.
She commended the Ghana Foundation for Sickle Gene Action for making efforts to help communities to close the gap in screening for sickle cell disease.
Also, the Ablekuma West Municipal Director of Health Services, Dr Valarie Osei Tutu, emphasised that beyond raising awareness, early detection and tackling stigma were critical in the fight against SCD.
Stop stigmatisation
A SCD advocate, Janet Ohene-Frempong, called for an end to stigmatising people diagnosed with SCD, as that had a psychological impact on their health.
Mrs Ohene-Frempong, who is the wife of the late renowned international Hematologist, Professor Kwaku Ohene-Frempong, said: “I encourage you to learn more about sickle cell disease to be able to support your friends who have been diagnosed of 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 programme. He also led in the Ghana - Norvatis partnership that sponsored Hydroxyurea medication for sickle cell disease treatment in Ghana between 2019 and 2021.
