Sickle Cell ‘Warriors’ and the Nigerian nation
By Femi Olugbile
The World Sickle Cell Day (WSCD) was observed in Nigeria, and several other parts of the world last week, on the 19th of June.
Sickle Cell Disease (SCD) is a heritable blood disorder that affects mostly people of sub-Saharan Africa, Middle East and South Asia. It was formally acknowledged as a global health problem by the World Health Organisation in 2006. The 63rd United Nations Assembly subsequently designated June 19 and World Sickle Cell Day.
As the largest black nation on earth, Nigeria has the dubious distinction of being the nation with the largest number of people living with sickle cell disease, as well as those carrying the genetic trait of the disorder. The scars of the disease are deeply embedded in the history, culture and world view of the various peoples of Nigeria. Two of the most famous Nigerian poems are titled ‘Abiku’. One is by JP Clark, and the other by Nobel laureate Wole Soyinka. JP Clark’s unforgettable lines go as follows:
‘Coming and going these several seasons
Do stay out of the baobab tree
Follow where you please your kindred spirits
If indoors is not enough for you…’
They capture the pathos of a frustrated mother who has just lost her child, again.
Wole Soyinka’s pictures the experience as a confrontation in which ‘Abiku’ is taunting his helpless mother as she makes futile efforts to prevent him from dying.
‘In vain your bangles cast
Charmed circles at my feet
I am Abiku, calling for the first
And repeated time…’
Soyinka was accosted some time ago by a critic who wanted him to acknowledge that he would have written the poem differently many decades ago if he, and all the world, had known then that Sickle Cell Disease was a major culprit leading to the repeated cycles of early childhood death seen in many Nigerian households, which was cast in metaphysical terms as ‘Abiku’, or ‘Ogbanje’. ‘Kongi’s’ reply was that culture was dynamic.
Several PhDs and Professorships in different Universities of the world have been founded, at least in part, on scholastic examinations of the nuanced comparisons between Clark’s and Soyinka’s versions of ‘Abiku’.
Yes, SCD is a major player in childhood illness and death, as are malaria, chest infection, and other causes such as malnutrition, all of which are still, sadly, widely prevalent.
Medical Science has progressed over the years, as have the determined efforts by different societies, including Nigeria, to understand SCD, to improve the lives of those who live with the genetic condition, to prevent it, and, more lately, to discover a permanent cure.
4-6 million Nigerians live with Sickle Cell Disease, and about 150,000 babies are born with the condition annually. Globally there are 50 million people living with SCD. Sub-Saharan Africa – mostly Nigeria and DRC, contribute 75% of the 300,000 babies that are born annually with the condition. One in every four Nigerians carry the trait. 50-90% of children born with SCD in low-middle-income countries (LMIC) die before their fifth birthday.
It is a significant public health challenge with grave socio-politico-economic consequences. Neonatal screening can now identify babies with the condition and lead to prescriptive monitoring and management. Instead, in Nigeria, ‘warriors’ are still identified much later when they are taken to the hospital gravely ill with one or other manifestation of ‘crisis’. Long term use of medications such as oral penicillin and hydroxyurea which help to improve the experience and stem the tide recurrent illness which leads to long school absences and educational failure are not accessible to most of the people. While basic support services are increasingly available in public and private facilities, higher-end services such as Apheresis are only available in one or two privately run facilities, even in cosmopolitan Lagos.
The term ‘Warrior’ is used in SCD support circles to encourage people living with a condition that is indeed a war from day to day. There is the experience of pain, the frequent debilitation, and the repeated disruption of school, work or family life.
On the positive side, there are celebrity ‘Warriors’ who have become models of resilience for others. There are several examples of people who have lived to a ripe, active old age.
There are increasing numbers of Sickle Cell self-support clubs in Nigeria.
Many NGOs and private sector entities have stepped in to improve the story of SCD. The Sickle Cell Foundation of Nigeria, founded by Prof Olu Akinyanju, has a prominent presence in raising the visibility of SCD through advocacy, as well as through the provision of a range of services from genetic counselling of intending couples to the provision of Bone Marrow Transplantation. Other facilities such as Next Haematology are ramping up their services and reaching beyond Apheresis.
The global approach is focussed on public enlightenment and increasing provision of services. It is still best practice to counsel against marriage between two people who carry the sickle cell trait. Early identification and life-long support offer the best chance of a full and normal life. Specialised services that are accessible and affordable are an absolute necessity. Total cure – through Bone Marrow Transplant and more lately Genetic Treatment need to be increasingly domesticated.
It is appropriate to end by emphasising the financial access barrier to care that has to be urgently addressed in Nigeria. Most existing Health Insurance schemes refuse to provide cover for SCD patients, labelling SCD as a ‘Preexisting Condition’. This is a disgrace.
It was salutary the other day to hear that the Afrobeats music star Adekunle Gold, a ‘Warrior’ himself, has donated health insurance to 1000 SCD patients through his foundation, in partnership with Lagos State Health Management Agency. It is the way to go.
It is hard enough being a ‘Warrior’ in a war one did not choose. Government must compulsorily make Health Insurance accessible to SCD ‘Warriors’. Legislation will be required to ensure compliance by Health Insurance companies.
These are the minimum services Nigeria owes to its ‘Warriors’.
