Recognised by the World Health Organisation (WHO), The Sickle Cell Foundation Nigeria was established in November 1994 as a non governmental and non profit making organisation dedicated to the proper care and control of sickle cell disorder in Nigeria.
In this interview with Chiioma Obinna, Chairman of the Foundation,Â an expert on haematology, Prof. Olu Akinyanju sheds light on the burden of Sickle Cell Disorder in the country andÂ why it may not be eradicated Excerpts:
Burden of SCD
Our mission is to develop a world class National sickle cell centre that will drive the search for effective solutions to sickle cell and related disorders.
Today over 40 million Nigerians are healthy carriers of the sickle cell gene, while over 150,000 babies are born each year with sickle cell anaemia (Hb SS). This is more than the population of Togo, Ghana and Niger put together. The population is a great problem here. Unfortunately, little attention is being giving to the disorder.Â Â Over 80 per cent of children born each year with sickle cell anaemia are born in Africa. We at the centre believed that the sickle cellÂ centres are ideal institutions for addressing the problems of SCD as shown over 30 years ago.
Since then, the average life expectancy of persons with sickle cell anaemia in America rose from 14 years in 1974 to 53 years in 2007. Even that life expectancy isÂ greater than the life expectancy for normal people in Nigeria.
Is the number is coming down?
No, it is not coming down and it is not stagnant. It is not reducing and cannot reduce because the population is rising. As population is rising,Â more people will carry the trait and there will be random marriages and that will be one in 15 couples who carry the trait. When you talk about statistics, it is just like asking the population of Nigeria today?
No oneÂ knows. To determine how many people who have the trait or that have SCD, it is something that has to be done with some service providers and the sickle cell community will have to think of.Â To get the records will cost money and time and we donâ€™t have it now. But this can only be possible when we have liaisons in every State of the Federation. But for now we based it on oneÂ in four NigeriansÂ carrying the trait.
Cost of treatment
Cost of treatment is still high. For prenatal diagnosis,Â an individual will pay over N200,000 because nobody is sponsoring it. To sustain it, it has to be paid by those who need it. Genetic services should be accessible to everybody not for a few.
As at today, we have done 800-900 couples. We could have done more people if it was something more affordable and accessible. The best time to do this prenatal diagnosis is between the 11th- 13th weeks of pregnancy. This is so because we must first carry out an ultra sound scan to see whether placenta is developed or not. The sample for this diagnosis is taken from the placenta.
We run so many clinical services with donor supports. We supervise the running of Sickle Cell clinics including the free provision of drugs and some equipment in a few States in Nigeria. In Lagos we support Massey Children Hospital andÂ Gbagada General Hospital with some funds from MTN Foundation which also applies to Benin Sickle Cell Anaemia Centres. General Hospital Okwe in Asaba, Muritala Mohammed hospital in Kano.
We are hoping that MTNF,Â or other organisations can support activities in other States. We are hoping that MTNFÂ will addÂ Owerri because the State has a dedicated sickle cell centre established by one Mr & Mrs Nwosu. We are hoping in future to have our presence in every State of the nation.
The goal of this intervention in the States is to demonstrate to the host governments the beneficial impact of Sickle Cell Clinics on the lives of affected persons and hopefully, encourage them to take over the running of the clinics and expand their coverage within the State.
We are also into genetic counseling, Mondays, Wednesdays and Fridays . One of the major servicesÂ is Prenatal Diagnosis. This service helps couples for whom there is real possibility of bearing children with sickle cell anaemia, to find out the haemoglobin genotype of their unborn child in early pregnancy.
But it is limited to people who can afford it because it is not subsidized. Hopefully, when we do start getting funding from international agencies, we will begin to subsidise it.Â Unfortunately, sickle cell has not attractedÂ kind of funding attention like they get for malaria or tuberculosis.
But we hope it will because the United Nations in December 2008Â recognised sickle cell as a public healthcare problem that needs to be supported. June 19 is the day chosen every year, as the World Sickle Cell Day. It was first marked last year. All we could do was to have a ministerial press briefing in Abuja andÂ few States like Ogun where they held a symposium, in Owerri, thwas a kind of rally.
We are seriously concerned that numerous drugs with unproven claims of curative or palliative properties in the treatment of sickle cell disorder are freely marketed in Nigeria.
I donâ€™t think the churchesâ€™ and mosquesâ€™ decisions or attitude about couples marrying themselves are right or will help in any way. I think this is something some of our members are saying. We should do special programmes for religious groups. A lot of people assume people who have the trait only marry themselves because of ignorance. That assumption is not correct because we see a lot of people who married themselves like AS, SS.Â There are many cases like that.
We have had SS marrying SS. I have seen that in Brazil, Jamaica, and Nigeria So they get married.Â One of our members from Onitsha told us that a Catholic Church started this some years ago but thatÂ their members were submitting wrong results. For instance, if I want to marry you and the church requested for our genotype, then one of us will claim to be AA, so it leads to denial, falsification and it is really creating a room for stigmatisation against people living with SCD. We had a workshop sometime in Port Harcourt, a lady recounted how she was to marry a man and the influential father of the man decided to do genotype and it was then it was discoveredÂ both of them were AS and he stood his ground that the marriage should be cancelled.
She said since then, she has become AA. So the decision of the church and mosques will only drive them underground. People will deny. We even have cases that oh our son has been cured of and whatever by churches who claimthat they do that through miracle. I have seen a church in Lagos where somebody has been cured of sickle cell and HIV. BothÂ casesÂ were lies. There was a time they did a genotype and it was AA after the miracle and when the child fell ill again, it was discovered that the child still has SCD. The father of the child could not believe it. These claims are false.
This idea of you thinking you can prevent or eradicate as some people say eradicate sickle cell is a fallacy. The only way you can do I is to take all those who have the traits to somewhere and shoot them. Or transfer them outside Nigeria and asked them not to come back to Nigeria. Leaving only the AAs.
Since this option is not possible, the only option is to look after them and get them better as well as turn it to a chronic condition like where people can live with hypertension and diabetes.
It is unfortunate, that SCD is not like infectious condition. Infection condition always attract more attention. Lets say, 100 years ago, Sickle Cell may not have attracted more attention because a lot of people were dying from small pox,. Chicken pox, measles.
These diseases were controlled and small pox eradicated because the western world are more advanced and tackled the diseases with vaccinations and that was how small pox was wiped out from Nigeria. But we still have a lot of malaria, tuberculosis and again infection which can be cured. Tuberculosis spread like mad .There is more efforts on infections disease because people may want to travel out side the country unlike Sickle Cell anaemia.
We havenâ€™t got funding for research. A lot of people who gives us funds sometimes requested for a particular project. Like the fund we received last week from Stanbic IBTC is for developing our library. Nobody has yet given us funding for a sickle cell research. We are hoping to get funding into this area. If we have grant ready we will do research. Without researchÂ you donâ€™t really get any progress.
Government is happy with what we are doing but what was voted for all non communicable diseases is quiet more. I heard N50 million last year for diseases like cancer, diabetes, sickle cell asthma amongst others.
AS couple having SS children
Yes, you can have more than four children without getting SS. There is a man with seven children. It was t the 7th childÂ that was SS. Others were AA, AS. That does not follow . Sometimes in a family, you will have SS first to the third child and others can be AS all through. What a child takes does not stop another child from taking it. People erroneously believe that once you have four children one must have be SS, one will be AA and the other two will be AS. It is not right. The child may decide to take the same thing from both the mother and the father.
I am a haematology expert. Any way, something pushes somebody to something. Mine was that when I came back to Nigeria, I found that a lot of people coming to clinic then has the problem. There was not enough information. Then, I was working with one social worker who was helping me counsel them. Many people then believed it was witchcraft, some felt it was their neighbours or brothers that was responsible for the illness. But I counseled them that it is a condition that has to do with the gene.
One thing I learnt from my father is that whatever is worth doing, do it well. Little by little I started doing some publishing works on sickle cell and the WHO invited me and said Nigeria required a sicle cell centre which I admitted. From then, I stopped everything concerning blood transfusion and decided to focus more on sickle cell. Again, I discovered that whatever you are doing if you donâ€™t devote more time you may not take it to the level you would have loved to take it to.
IÂ remember an American asked me then why I am into sickle cell and not HIV and if I was making money from it? I told him I was not into it because of money. I only discovered that the country needed help in that area that was why I went into it fully. Unfortunately, the problem is much butÂ not being addressed.Â I donâ€™t have a child with sickle cell disease and I am not a victim either. Iâ€™mÂ only into it to assist affected Nigerians.