The United Nations General Assembly in 2008 set aside 19 June of every year as the World Sickle Cell Day for the purpose of increasing public awareness about sickle cell disorders, empathizing with them and supporting them in order to achieve their potential. The theme of this year is “Shining the light on sickle cell”.
I will begin by shining the light on sickle cell disease with the WHO’s report of 2020 which pointed out that approximately 5 per cent of the 7.7 billion population of the world carry trait genes for haemeglobin disorders, mainly, sickle-cell disease and thassaemia. It added that over 300,000 babies are born each year with SCD and 75 per cent of them are born in Africa where mortality rate for under-five children is estimated to exceed 50 per cent.
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The CEO of sickle cell foundation in Nigeria, Dr Annette Akinsete said that Nigeria has the highest burden of the SCD in the world as virtually 150,000 babies are born every year with sickle cell disorders. The UN also indicated that there are over 25 million SCD patients in the world and 15 per cent of them live in African continent.
Additionally, the WHO’s recent report of 2020 said that 90 per cent of people living with SCD live in three countries, namely, Nigeria, India and Democratic Republic of Congo. It added that Nigeria bears the greatest burden of SCD in the world as there are 40 million carrying the genes of SCD in the country.
It was discovered that those who are living with sickle cell disorders are said to be at an increased risk of developing serious COVID-19 symptoms. In the current post-COVID 19 era, which adds salt to the wound of poverty for parents or caregivers of those patients living with SCD, there is an urgent need to lend them a helping hand. It was also shown that SCD worsens more often in countries where malaria is common and people who carry the sickle cell trait are less likely to have severe forms of malaria.
Now that SCD’s patients of Nigeria joined their counterparts around the world for marking this crucial day in depression, loneliness, pessimism, gloominess and untold misery on account to either lack of access to their too expensive drugs or severe pain of the deadly disease. They are also being maltreated, abhorred and marginalized by their siblings, school mates and the entire society. As the disease requires constant care and management; the poorest parents or caregivers of patients living with SCD experience untold hardship in the course of taking care of their children.
It was discovered that the major cause of under-five children’s mortality rate in African countries, more especially in Nigeria, has to do with SCD, followed by malaria because so many patients are not aware of their genotype. They also refuse to make newborn screening and pre-marriage genotype tests as it is common in the developed world.
It is quite evident that poverty and financial problems contribute negatively towards exacerbating SCD as many parents are incapable of buying their drugs because of their high cost and the huge sum of money to be spent. This is why this disease is gradually becoming an enormous task or a huge social problem in Nigeria. These SCD’s patients are always in and out of hospitals that create financial stress, physical stress and trauma. Sometimes, this disease makes parents of these SCD’s patients to be fed up with them. So, these parents and sufferers of SCD are in dire need of help from the federal and state governments.
On November 13, 2019, Rep Umar Abdulkadir Sarki, member representing Katagum Federal Constituency at the lower chamber of National Assembly, presented a motion calling on the Federal Ministry of Health to develop an efficient system for management of SCD in Nigeria. He has shown to the House that SCD has been with African people for the last 12 thousand years and nothing has been done to manage the scourge of the illness in the continent, more especially in Nigeria.
He called on the Federal Ministry of Health to:
(i) Introduce free and compulsory newborn screening programme which shall include screening for SCD in all hospitals in Nigeria.
(ii) Provide free treatment and counselling service to patients with SCD
(iii) Sensitize religious institutions and the Judiciary to include results of genotype tests as one of the conditions for marriage.
(iv) Collaborate with government and private broadcasting stations for continuous awareness campaigning on the cause, health consequences and solutions to the disease.
(v) Urge the Federal Ministry of Education to include sickle cell education in science subjects in all primary and secondary schools.
(vi) Mandate the committee on Healthcare services, information, National Orientation, Ethics and Values and Basic Education and services to ensure implementation.
This motion was voted on without any opposition; adopted and referred to the relevant committees of the House.
Furthermore, there are so many crucial lessons to be learned and replicated by Nigeria’s governors from Abia State Government as on Thursday, June 10, 2021, during the flag-off of a two-day ‘Train the Trainer curriculum Dissemination Workshop’ for teachers in Umuahia of the state, the Secretary to the State Government, Mrs. Chris Ezem, who represented the governor, had said that the Abia State Government had integrated the study of SCD into the state school education system and the governor’s administration had made a legislation that makes it compulsory for every citizen in the state to undertake genotype and blood group test and have the results on their identity cards, while institutions and marriage registries that wed or join couples without firsts demands test results run the risk of being fined and closed.
Finally, considering experiences and problems being encountered by people living with SCD and their parents or caregivers, I appeal to the Federal Ministry of Health to help act on Umar Abdulkadir Sarki’s motion without further ado. The SCD’s sufferers are absolutely in dire need of support from the three tiers of government by subsidising their treatment costs. To deliver healthy and surviving children, men and women should find and marry their matching genotype partners.
Mustapha Baba Azare writes from Alkali Musa Street, Bauchi State