A lot of efforts have been made by stakeholders to create awareness on the Sickle Cell Disease (SCD), yet there is a shocking prevalence rate in the country. Medical experts speak to ENE OSANG on why the problem has persisted.
Nigeria joined the rest of the world to mark the 2019 World Sickel Cell Day on June 19. This year’s celebration marked the 40th anniversary with the Sickle Cell Society delivering research and educational projects, supporting individuals and families and influencing policy.
The society, in addition to celebrating its achievements, solicited fundraising, donations, in participation and running events, volunteer to raise awareness and make a positive difference to people affected by sickle cell over the next 40 years. Sickle Cell Society is targeting to achieve £40,000 and make its 40th anniversary appeal a success.
The Sickle Cell Disease (SCD) is a condition called anemia which makes one feel tired because it sticks to vessel walls, causing a blockage that slows or stops the flow of blood.
The disease is a disorder of the blood caused by inherited abnormal hemoglobin (the oxygen-carrying protein within the red blood cells).
Research has shown that the disease predominates in sub-Saharan Africa, East Mediterranean areas, Middle East, and India. Nigeria bears the greatest burden in sub-Saharan Africa.
According to Akinyanju O. O. Ann in an academic science review article, about 25 per cent of adults throughout the country have the sickle cell trait, AS, while the Hb C trait is largely confined to the Yoruba people of South-western Nigeria in whom it occurs in about six per cent.
Reports by the American Centre for Disease Control and Prevention (CDC) states that over 300,000 babies globally are born with severe sickle cell disease, with 75 per cent of that number, 225, 000, are born in Sub-Saharan Africa and Nigeria carries 66 per cent of the burden in the region.
This means that in Nigeria alone, nearly 150,000 children are born annually with sickle-cell anaemia. The country bears 50 per cent of the global burden.
Prevalence
Medical laboratory experts maintain that the current high prevalence of the Sickle Cell Disease (SCD) amidst the overwhelming awareness on the disease was because many people are still ignorant.
Speaking exclusively to Blueprint Weekend, the Consultant Heamatologist at Bingham University Teaching Hospital
Dr. Chizoba Nwankwo said lots of people are not going for genotype checkup before marriage, while others think it’s not important.
“Some people get married to each other without doing genotype test. Many other people will say that they don’t know or think it is important to carry out such tests before marriage. But some churches are now aware and before they wed you they ask you to do screening for genotype,” she said.
Dr. Nwankwo, however, noted that those who are carriers do not have the disease and so, they can be managed, stressing the need for continues education to people to know that they must do their genotype first before marriage.
Similarly, the Head of Department (HOD) at the Karu General Hospital Laboratory Ify Nduagubam, said SCD prevalence is majorly due to ignorance, adding that some intending couples God has destined them to be together.
“When you tell some people that when you have AS gene and your partner also has AS, definitely you will get a sickler when you marry and give birth but the person will tell you that God has ordained them to be husband and wife. This belief is not only from the lay man even doctors say that.
“I know two of my colleagues, they are doctors with AS gene and they said they have prayed about it and luckily for him they have three children now and none is SS, but some will take the risk and it’s a chance of 1 in 3 or 1 in 4.
“If you have your first child and the child has SS gene definitely the others will be AA, again if you have the first and the child is AA definitely the fourth will be SS.
“Just like the doctor I mentioned earlier, he was lucky enough the first was AA and the other two are AA but there is every possibility that a fourth child will be SS.”
I also have another colleague who is a sickler and married a person with AS gene, they have two children now and they don’t have the crises and when I asked he told me its prayers and your belief and I believe in prayers too,” she added.
False genotype trend
Nduagubam maintained that cases of false genotype is rare in the cities, stating however that most of such cases and SCD can be in rural areas where there is no much information or in some private hospitals.
“Genotype cannot be falsified, it depends on the person doing it like in my own facility you can’t just tell somebody that you have SS gene. It has to go through a confirmatory test even if it means going to another hospital to confirm it” she said.
“Before you confirm that it is sickle cell you must view it on microscope to see the sickle cell shape. So, genotype can’t just be falsified except maybe the person is in a haste to get the result but when it’s properly done it can’t be false,” she maintained.
What couples must do
Dr. Nwankwo stressed the importance of intending couples to know each other’s health status before marriage; however, she noted that there are various options that sickle cell couples can take today and live happily.
“Marriage is something of a lifetime and I don’t think it is right to force somebody to marry one because their genotype is AA or AS because
“There are some options like to adopt a child or to abort but in Nigeria abortion is not allowed like in other climes when the baby is still in the womb you check the genotype and then abort the baby but that is not acceptable even for me because I know couples with sickle cell that adopted. There is also the option of surrogacy so I don’t think they can’t be married.
“That somebody has sickle cell doesn’t mean it is the end of the world. So many things are done now to make them live very long. For example I have patients that are 50 years,” Nwankwo stated.
On the contrary, Nduagubam strongly advocated against two sickle cell patients taking the risk of getting marriage after knowing their medical status.
“I have a cousin now who is a carrier he is a custom officer and has been looking for a wife but unfortunately all the ladies he is meeting have AS gene and I advised him to be patient and not take the risk because the stress is much.
“Awareness has been on, parents are always advised to talk to couples, their children about to get married, that before they marry they should go and check their genotype.
“If you are both AA you can marry each other, AS and AA can also marry. It’s only when both are AS that there will be challenge and we have carriers,” she explained.
Government’s role
A bill seeking to make haemoglobin-genotype testing compulsory for intending couples in Nigeria was passed into law by the National Assembly in 2017. The bill is aimed at reducing the chances of marriage between people with the wrong match of genotypes.
While hoping that the bill would be accented to by the President, Dr. Nduagubam expressed disappointment at some couples who won’t take advice.
“Even if you finish addressing this issue, those who want to be married will still go ahead because if my colleague, who is a doctor, can take such risk what else can we say,” she asked.
There have been lots of awareness creation but it’s still going on so the only thing is for government to continue the awareness creation for the young ones coming up. So it’s basically about continuous awareness.
Effects on society
Nduagubam maintained that people who have AS gene should not be married stating: “It’s not good, and worse still people who normally have this sickle cell problems are people with poor background. So, the challenges of when they have crises like frequent hospital visits, changing of blood, and all of these requires money which most time they don’t have.
“But, when it comes to the ‘big men’ you don’t hear much of the crises because they can even fly their children abroad for medical care. Patients should do constant check up, checking the PCV regularly to ensure it is not low because this is when the victims face the challenge. They should eat balanced meals too.
“It will be good if government can tell the National blood transfusion to give free blood to sickle cell patients because some of us go to donate blood free and that free donation can be given to sickle cell patients free because sometimes these patients take 2-3 pants of blood,” she urged.
On her part, Dr. Nwankwo urged government and all stakeholders to create more awareness on the disease to enable more people especially in rural areas have more information on the disease.
“Government has the responsibility to educate the people especially in the rural areas to inform many people because if many are aware then we can have people who will decide not to marry each other because they are aware,” she said.
