The coalition of sickle cell disease NGO’s have called on government to implement a national strategy aimed at combating sickle cell and its related deaths.
Addressing the press at a ceremony to commemorate this year’s World Sickle Cell Day in Accra, the founder and CEO of the Sickle Life and Haematology resident at the Korle-Bu Teaching Hospital, Dr. Sefakor Enam Bankas said the time has come for government to give equal attention to sickle cell disease like the attention given to other diseases like HIV/AIDS and COVID-19.
“Government must create and strengthen a national sickle cell disease program within the framework of non-communicable diseases prevention and control. We have control programs for malaria and HIV but what is the national strategy for sickle cell, there is none” she told the media.
She said the disease has killed and still killing Ghanaians and there is the need to begin stakeholder consultations to implement a national strategy in fighting the disease.
According to her, 15,000 babies in Ghana every year have the sickle cell disease. She added that about ninety percent of kids who were born with the disease die before age 5. Statistics she described as worrying.
“300,000 babies are estimated to be born globally with the disease every year and more than half of this number is in Sub-Sahara Africa. 15,000 babies are born with sickle cell disease in Ghana every year. Also, 90% of children born with sickle cell disease in Sub Saharan Africa die from the disease. These are alarming statistics but because we keep hearing them, they seem to have lost their impact. We know this statistics but nothing has changed.”
She said despite the seriousness of the disease, the Ghana Health Service and Government have not channeled their attention to creating awareness to help the public consider their choice of partners and their compatibility to prevent couples who are not compatible from giving birth.
Dr. Sefakor said a document released by the World Health Organization recommending ways to fight the disease has been ignored because no attention has been given to persons living with the disease in the country.
According to her, a national strategy towards the fight against sickle cell will help in early screening and treatment among babies to prevent the late detection of cases when they have reached complicated levels.
She disclosed that the life expectancy for sickle cell patients across the world has increased but unfortunately, Ghana’s case is different. Dr Sefakor said this is because countries around the world have been exposed to research and better therapies that are supporting persons living with the disease to live longer than they are expected to.
Dr Sefakor also called on government to make provision for sickle cell disease treatments and medicines to be put on the National Health Insurance System. She explained that because medications are costly, most people do not seek treatment thereby leading to them succumbing to the disease.
Dr Sefakor who was speaking on this year’s theme dubbed: “Combating Sickle Cell Disease Through Stakeholder Support” said the role of advocacy in fighting the disease has been downplayed. She used the opportunity to call on private and government agencies to join in the fight against the disease. She also called on the media to use their platforms just as they are doing for COVID-19 to advocate and create awareness about the disease.
The coalition of Sickle Cell Disease (SCD) is a group of Non-governmental organizations that have come together to create awareness and support for persons living with Sickle Cell disease in Ghana. The group is made up of:
Sickle Cell Awareness Initiative
Sickle Strong Warriors Foundation
Ghana Society of Haematology