In this interview with PREMIUM TIMES to mark the World Sickle Cell Day, Aisha Maureen Edward, Director of Centre for Moral Mentorship, an organisation that advocates the promotion of the wellbeing of people living with sickle cell anaemia, speaks on the ordeals the sufferers of the disease go through in the Nigerian society. Mrs. Edward who is also a media consultant and a moral crusader also advocates the inclusion of sicklers as compulsory beneficiaries of the National Health Insurance scheme.
PT: What motivated you into campaigning for people with sickle cell anaemia, and are you a sickler?
Aisha: Yes, you are very correct. I was born with sickle cell and after my personal experiences of stigmatization I see it as a necessity to be an activist for sicklers. Also, officers and men of the Nigerian army made me to understand during my days as their image maker that sicklers are gold and jewels. That motivated me to advocate for other patients. As I am speaking to you now, any time I have health crises, I will place a call to any of the medical commanders that has handled my case before and I will be attended to at no cost. Also, it is necessary to encourage these patients. You may not know that about 80 per cent of the patients are very intelligent. They are only physically deficient but psychologically and mentally you can’t beat them there. So it is very necessary to encourage them.
PT: Do you receive maximum support from your family?
Aisha: Yes, my father gave me a lot of encouragement and support. Though I had some bad experiences with my relatives the care I received from my father superseded all.
PT: You worked for the Sickle Cell Foundation. Can you speak more on that?
Aisha: Yes, but not exactly for the foundation. I have my own mentorship organization. As I said earlier I don’t like using the word NGO. I am the director of centre for moral mentorship. I don’t prefer partnering with the sickle cell foundation due to lots of fraud there. You may not know that many officials and beneficiaries of that foundation are not sicklers and when a healthy man or woman parades himself or herself as a sickler and generates funds from the public, do you think such a person has the moral right to speak for the real patients? Anyway I will speak more on that in the course of this interview.
PT: Some churches claim to heal all manner of sicknesses including sickle cell. Do you partner with such “men of God”?
Aisha: My brother, to tell you the truth I don’t go to church but I remain a Christian.
Aisha: Clergymen are our worst enemies. It is true that some of them are good as I can remember a reverend father that cared for me when I was seriously ill and took charge of all my bills but many of them are Judases. They will stage-manage testimonies to deceive their congregation that they are wonder workers. I know that even Christ used to move around to pray for the sick and heal them but nowadays these wonder workers only do such miracles in their churches. If they know they are genuine why can’t they visit hospitals and perform such miracles. If I say the number of churches my parents took me to due to this illness you will marvel. You can’t believe that a Rev. Father even warned me to stop talking to him because my name is Aisha. You can imagine the kind of psychological depression that gave me. I am a Roman Catholic and I also attended Roman Catholic school but that won’t stop me from speaking the truth. Do you believe that some of these clergymen usually discourage their members with sickle cell from seeking medical attentions by prophesying their healing when the illness is very alive in their body system and as a result, the health conditions of those patients worsen and which eventually lead to their early death. Many have been victims of such ignorance. Also, some clergymen always discourage their congregation with sickle cell from undergoing genotype test before marriage with the claim that “with faith mountains can be moved”, thereby promoting the increasing rate of the illness as such untested prospective couples with the illness will eventually breed sickle cells. One of these wicked clergymen even collected my original test result when I was in serious health crisis with the claim that he will raise funds for me. He actually raised the funds but disappeared with both the funds and my test results and discontinued using his GSM line to prevent me from reaching him. Dear, it will take the whole day to speak on our betrayals by clergymen. One promise I can give the church is that though I don’t attend, my children will always do but I am very sure that when they are of age, they will have my experiences and also stop. May God help us!
PT: Is there any relationship between your NGO and Sickle Cell Foundation?
Aisha: Not at all. I can’t partner with an organization that is full of fraud. Prof. Olu Akinyanju should show Nigerians the beneficiaries of various funds he received in the name of the foundation. If he does that, you will be surprised that majority of them never had sickle cell. Though we need some financial assistance we are not beggars. It pains me when various agencies donate money to this Foundation. What we need is a bill that will make all of us compulsory beneficiaries of the National Health Insurance scheme (NHIS). I was shocked when I heard that a bill towards that allegedly sponsored by the current Delta State Governor Ifeanyi Okowa during his legislative days in the National Assembly was dismissed by the law makers. Why should such happen? I won’t be surprised if some beneficiaries of these fake Foundations were behind that to promote their dirty business with our names. Human Rights activists should also come to our aid. Our rights are deprived from us before our eyes. Another thing we need from government and well-wishers is employment. Money will certainly finish within days but meaningful jobs will sustain us on the long run.
PT: What advice do you have for your fellow sicklers, government and well-wishers?
Aisha: My major advice to all fellow sicklers is to be always self-confident throughout the short time we are to live on this planet. Let us not be discouraged by stigmatization rather we should always endeavor to put in our best for the society. Let us also always avoid dirty environment and drug addiction. Sicklers should also not joke with their medications as well as their doctor’s advice. We should also not be deceived by fake clergymen that delight in exploiting our health conditions to their benefits. Always close your eyes to pray and open your eyes to see and never forget that heaven helps those who help themselves so let us not joke with our medications. Sicklers should also avoid extremely cold and hot environments. As for the government and well-wishers I will advise them to stop donating money to impostors. We are not beggars and what we need most are laws that will make it mandatory for all of us to be beneficiaries of the NHIS and make it compulsory for every intending couple to undergo genotype test in order to minimize the rapid rate at which children with sickle cell are born. The government should also make it mandatory for the National Population Commission to keep genotype data records of every Nigerian in order to make it difficult for impostors to dupe the state and our well-wishers. I will also advice the government and private establishments to always provide automatic employments to every citizen with sickle cell. I also want to use this medium to advise the government to thoroughly investigate the activities of the National Sickle Cell Foundation. Many citizens are dying daily due to the sickness while some fraudsters delight in exploiting the bad health conditions of the patients to their own benefit.
PT: You are Igbo but your name is Aisha. Why do you bear the name?
Aisha: I received the name from northerners due to my cordial relationship with them. I will like you to google the meaning of the great name. I am in serious love with the name and I am not willing to drop it because when I served as the image maker of the military in the north I was treated like a daughter by the northerners.