Art and the scourge of sickle cell disease

A recent offering from Nollywood has brought attention to an important medical problem. Strangely, even though Nigeria enjoys the dubious distinction of being the world capital of the disease, Nigerians know very little about it. Instead of hard knowledge, there is an abundance of myths and misinformation.

The curiously titled film Strain is currently playing on NETFLIX. It was written and produced by Oluwatoyin Adewunmi and directed by Uduak Obong Patrick.

Anticipatory attention was driven to the film by the Twitter noise generated by a young Nigerian medical doctor and social entrepreneur, who goes by the sobriquet of Aproko Doctor. The young man was on the radar even before the high-minded #EndSARS struggle that ended in a fiasco of process mismanagement and government mischief, where, in true Nigerian fashion, the baby was thrown out with the bathwater. He always strikes the eye as a multitalented man who is not defined or limited by his medical qualification. He would regularly dispense off-handed practical advice to his teeming Twitter audience in an easy-to-digest form. His profile reveals he is an actor, editor, and businessman. And, oh, he has over a million followers.

Aproko Doctor belongs in the demographic of those who have been advised by the President of the Republic to ‘behave’ if they want to have a life. In reality, they have a life already – it is the ‘adviser’ himself that is disconnected.

Strain is the story of a young Nigerian family that discovers, to their utmost surprise, that their young son has sickle cell disease. He begins to have repeated crisis at home and in school. These crises, characterized by severe bone pains, weakness, and an appearance of impending collapse, not only affect the life of the boy but lead to massive disruption in the lives of the whole family, generating reactions from guilt to anger and recrimination. At the back of everybody’s mind is the fear that he may be taken from them by the cold hands of death.

Sickle cell trait is an inherited gene that leads to a tendency for red blood cells circulating in the blood to become malformed, diminishing their capacity to carry out their oxygen-carrying function around the body. Sickle cell disease occurs when the gene is inherited from both parents. The logic about the danger of inheritance ‘from both sides is the reason why intending couples are recommended to check their genotypes before committing to marriage.

Sickle cell trait is present in up to ten percent of African Americans and is detectable to a lesser degree in other parts of the world, such as Asia and the Mediterranean. Sickle cell disease, which is the illness condition, is most common on the Africa continent. Nigeria carries the largest burden of sickle cell disease of any country in the world. Every year, about one hundred and fifty thousand babies are born with it. The condition is responsible for a significant part of the nation’s atrociously high under-5 mortality rate. The efforts over several decades to dial down the prevalence by ensuring that carriers of the genetic trait do not get to marry other carriers have seen limited success.

There have been strong efforts in different directions over the past few decades to improve the situation around the Sickle cell problem. One is to improve public awareness and encourage prevention through genetic counselling. Another, of course, is to improve the lives of the people already burdened with the condition. This requires not just unfettered access to specialized medical services, which are, sadly, very sparse, but improving the science around the subject and finding effective remedies. These may be palliation or outright cure. A few ‘homegrown’ remedies have raised hopes at various times, including the famous ‘Orin Ata’ associated with Professor Isaacs-Sodeye in Ibadan some decades back. There are some drugs and supplements that improve various aspects of the condition.

‘Permanent Cure’ for now resides exclusively in the option of Bone Marrow Transplantation. The bone marrow is the place where blood cells are manufactured in the body. Cells from the bone marrow of a healthy relative are transplanted to the person’s bone marrow to replace the ‘bad’ ones responsible for the sickle cells.

It is not as simple and straightforward as it sounds. The cells in the bone marrow must be killed off and replaced with the donated ones. In that delicate process, all immunity is suppressed, and the person is extremely vulnerable to infection. Sometimes the patient dies.

The denouement in Strain sees the doctor, played by our Aproko Doctor, bringing a new lease of life to the problem kid by carrying out a bone marrow transplant on him.

The simplicity depicted in his intervention is stretching credibility to the breaking point. Currently, there is no hospital in Nigeria that is able to carry out bone marrow transplantation routinely, although at least one is said to be under development. A serious-minded, strategically focused country that finds itself at the epicentre of such a problem should by now, have several centres offering the definitive treatment. Not Nigeria.

Bone marrow transplant requires not just trained specialists, and not just the equipment, and not just a willing donor, but also a highly skilled team to execute successfully.

There are several Nigerians who have had bone marrow transplants and totally got rid of their sickle cell status. Virtually all have had the procedure abroad. A hematologist in Benin, Edo State working in a government facility, successfully did a few transplants. Then, in a development characteristic of the Nigerian approach to matters of strategic importance, his team and his sponsorship evaporated. A young lady running an innovative Haematology practice in Surulere, Lagos is aiming to repeat the journey of the Benin professor in a private sector setting, and actually sustain it.

Strain is interesting and engaging, treating a human-angle story that is very real for many Nigerian families. It is recommended to viewers for entertainment and information.