STIGMA ON SICKLE CELL IS OUT OF IGNORANCE
This interview was conducted in 2008 and first published in 2008. It is being republished now as the issues raised then are still relevant today.
Professor Olu Akinyanju, Chair, Board of Directors, Sickle Cell Foundation of Nigeria, retired as a haematologist from the Lagos University Teaching Hospital (LUTH). As a committed professional, retirement cannot stop him from contributing in whatever way possible to address the problem of sickle cell anaemia in Nigeria. He spoke to Izuchukwu Ozoemena and Loveth Ezeugwu.
In a layman’s language, what is sickle cell anaemia?
Sickle cell anaemia is when somebody has inherited the sickle cell gene from both parents.
That gene is for what you call the haemoglobin, the red substance inside the blood. Haemoglobin is very important because it carries oxygen from the lungs when we breathe to the other parts of the body. In a layman’s language, gene is what makes you resemble your parents. Your ears, for instance, or any part of you may resemble your father’s because of the gene. Sometimes, the resemblance may be from the mother because the gene could be from your mother or your father. Their own genes could be from their own parents.
You said the gene is inherited from one’s parents. Before heredity, where and when did it start?
It started in the part of the World where malaria was very common, sub- Saharan Africa, excluding South Africa which is a temperate zone where they don’t have malaria. When this sickle cell or ‘S’ gene started to cause this ‘s’ haemoglobin, those who inherited that gene, or let’s say, the first person that had it, did not die from malaria. That person passed it on when he or she reproduced. Those people who had that gene had it only from one parent. So, they would have ‘S’ from one parent; haemoglobin ‘A’ which is the usual haemoglobin, from the other parent. So, we say that this people had the sickle cell trait, not the disease or the disorder. Those people can withstand malaria. Because the trait gave them the advantage of not dying from malaria, they kept passing on the germ. It came to pass that one in four persons carried the trait, because these were the people able to withstand or survive. The others were dying before the age of 5 or 10 and not reaching the productive age. And it wasn’t only in Nigeria that it started. There’s evidence that it also started in Central Africa, Senegal, around Saudi Arabia, South India and some other states. Like genetics, they were able to know that this is just the trait. But because they had to face malaria problem, that way the gene multiplied.
The Sickle Cell Foundation of Nigeria: what motivated the formation?
We wanted to address the subject of sickle cell. The World Health Organizatiuon, WHO, had actually recommended that any country with a huge population should build and develop sickle cell centres in order to address the problem. The problem has to be addressed comprehensively.
Who is really behind you financially?
We have a list of those who help us financially (banks, corporate bodies, NGOs, government establishments, multinational companies, etc.)
Looking at the physical structure on ground, some people suggest that your Foundation is for the rich only. Is it true?
Of course it’s not true. Sickle cell cuts across both the rich and the poor. It’s poverty of the mind. Were you expecting us to be in a hole in the ground then you know this is for the masses? This place I’m occupying now is one of the consulting rooms where a doctor will sit. How well could it be? What is so wonderful about it? So, I don’t see what rich people will come to…. We are an NGO.
Does it mean then that a sickle cell patient can simply walk in here and get the services you render free of charge?
There is nothing free because if I give you free lunch now somebody else will pay for it. This is not a hospital. This is basically a research training centre – training manpower to do research work. If you bring your child here and he has to stay, we have to admit him at LUTH; there are no hospital facilities here. Whether or not we charge that person, it has not yet been decided. We are waiting to finish the building…. We have to charge in order to sustain the service. We pay the doctors that give the service; we pay the nurses. We pay for the air conditioners, the generators working. So when you look at it, it doesn’t make sense to say that we give free service unless you subsidize to do that. But if somebody says okay for the next one year, I’m going to give you ‘x’ amount to cover the free treatment of…. Everything has to be worked out in that way. If not you just run aground in no time. You pack to leave because you will not be able to pay your staff. We run counselling services….
Who are members of the Foundation…. sickle cell anaemia patients or ordinary people?
We have the Sickle Cell Club, Lagos, with a lot of membership. In Lagos there are people with sickle cell anaemia themselves or any other persons (who are not sicklers). I’m not a sickler but I’m a member. Now I’m no longer the president. We have the executive. Some of the executive members have sickle cell anaemia. Anybody can join (the club). If you are interested and want to do something for sickle cell, maybe you have to start by joining the club. In Lagos you have the branches or area clubs: Apapa, Yaba, Isolo, Victoria Island, Festac, Ikeja, etc.
How is the Foundation reversing the stigma on people with sickle cell disease?
We speak to churches; we speak on air (via the radio) as we are doing now. Also when we counsel people we tell them about the stigma. The stigma is getting known. Of course it manifests in so many ways. It is because of ignorance. People think: oh I have somebody with sickle cell in my family; I should hide it. Nobody should know! People believe these things, you‘ll be surprised. There is this mystery, superstition and then of course the stigma. Now it is wearing out among those who are getting educated and are listening to us. For example in one lecture I gave, I took a lawyer who had sickle cell anaemia. She came with me to tell her own part of the story. She told how actually the doctors stigmatized. She had a case. But instead of diagnosing her diligently, they felt ah! That case must be due to sickle cell anaemia. The reason I was able to get her diagnosis is that I looked beyond her, regarded her as a human being. Never mind that you may have diabetes, sickle cell……. I call it automatic stigmatization.