Djikpo Komlanvi Béni, 31, is président of Afrique Zéro Drépanocytaire’, one of the most active sickle cell pressure groups in the French-speaking West African country of Togo. A masters degree holder and single, he speaks of his passion for sickle cell awareness with Contributing Editor, Ebere Afamefuna.
What led you to establish the Togo Sickle Cell Association:
We notice that in our country there is no action to inform the population about the existence of this evil disease and how they can avoid it. Then we have decided to create our association to sensitize the population about SCD and how to avoid it.
Why do you call sickle cell an ‘evil disease’?
I witnessed two siblings suffer and succumb to the condition. It was heart-wrenching. I am AS myself and I will not allow ignorance to visit the untrammeled suffering I witnessed to continue with me.
What year was the Association established and what are your achievements so far?
We founded our association, the ‘Afrique Zéro Drépanocytaire’ in 2015. We have sensitized four hundred persons and made medicals test in collaboration with our partners to one hundred persons.
Afrique Zéro Drépanocytaire – so you have zero tolerance for the increasing incidence of SCD in Africa?
Yes, we want an Africa free of sickle cell anaemia. This is our long-term dream, but the journey starts now!
What challenges have your organization faced and how have you attempted to overcome them?
The main challenge we faced is how to convince the leaders of churches to permit us to sensitize their youth about genotype and SCD before dabbling into marriage. Some church leaders oppose what we are doing on the grounds that marriages are divinely-appointed liaisons. Even when genotype tests show the intending couples are carriers of the sickle trait, the church leaders go ahead and solemnize the unions.
Roughly how many Togolese have sickle cell anemia? How many have the sickle trait?
Roughly one million have the sickle trait and three hundred thousand have sickle cell anaemia.
Do you think the government is doing enough to tackle the incidence of sickle cell disease in Togo?
The government is doing it’s best but it can certainly do more. The government established a national program for the disease but the program is yet to be implemented. However, the two centres government established for the treatment of citizens who have the disease are in operation.