From Dr Ibrahim Suleiman PhD
Unlike diseases like COVID-19, common cold, syphilis and AIDS, sickle cell disease (SCD) is not contagious, infectious or communicable. It cannot be transmitted to other people by simple air conduction, body contact or exchange of body fluid. It is a genetic disorder that is passed from parents to children the same way that a child could inherit his parent’s skin colour or any other genetic trait. SCD is inherited only when both parents are either carriers of sickle cell trait or are SCD patients themselves.
With over 300,000 babies born with SCD per year, Nigeria bears the highest burden of SCD in the world. It was estimated to affect over 3% of Nigeria’s population (> 6 million Nigerians). Similarly, a larger proportion of Nigerians (20-30%) are carriers of sickle cell trait, meaning that they have a bit of sickle cell gene, but they do not exhibit the symptoms of the disease.
The disease affects your red blood cells (RBCs), thereby altering their shape from the usual round and free-flowing nature to crescent-shaped and sticky red blood cells. When we breathe in air, oxygen is transported from our lungs to the rest of the body by the RBCs in the blood. The RBCs of an SCD patient has a very low oxygen-carrying capacity. This, alongside the hindrance of free-flow of blood (blockage) among SCD patients, results in repeated episodes of excruciating pain, organ damage or even stroke.
In addition to the excruciating pain, complications of SCD may include swelling of upper and lower extremities, fever, infections, acute chest syndrome and other life-threatening symptoms. If not properly managed it could lead to lifelong disabilities and learning difficulties.
With an average life expectancy of 40-60 years, people with SCD can live a long and active life. Late Mrs Asiata Onikoyi Laguda, a Nigerian who died earlier this year at the age of 95 was the world’s oldest SCD patient. Patients are expected to avoid stressors (such as heavy exercises, and microbial infections), take their medications regularly, take proper diet, undergo regular medical check-ups and drink lots of water for healthier living. Despite adhering to preventive measures, some SCD patients experience sickle cell crisis regularly. To date, the only cure for SCD is bone marrow transplant (otherwise known as stem cell transplant).
“There is no way to describe the pain. It is excruciating, it feels like pressure on your bones. Like someone is trying to break all of your bones at the same time”. These were the words of Mr Osayi Olotu, a social entrepreneur who battled sickle cell for three decades. Thanks to the discovery of bone marrow transplant procedure, today Mr Olotu’s genotype has changed from SS (for patients of SCD) to AA (healthy). He had his transplant at the National Institute of Health (NIH) in the United States in 2017 and he is currently free of the disease. Unfortunately, many SCD patients cannot afford travelling out to access this cure for SCD. The cost of getting bone marrow transplant abroad ranges from $100,000 to $600,000. There is therefore the need for more affordable alternatives to accessing this treatment here in Nigeria.
Bone marrow transplant involves the transfer of healthy stem cells from a donor (preferably the patient’s full sibling) to a recipient (the SCD patient whose bone marrow is producing sickle red blood cells). Interestingly, the procedure is currently available in Nigeria. Prof Bazuaye Godwin Nosakhare, a haematologist pioneered the first bone marrow transplant in Nigeria. It was conducted at the University of Benin Teaching Hospital (UBTH), Benin City, Nigeria. Unfortunately, the lack of support from the government led to non-sustenance of the treatment procedure at UBTH. Currently, there is only one hospital (privately-owned) that is capable of conducting the procedure. Even though it is cheaper doing it in Nigeria, the cost of the treatment which is approximately around N12 million remains beyond the reach of many Nigerians living with SCD. From 2011 to date, Prof Bazuaye has conducted a bone marrow transplant for twelve SCD patients, of which only two had mild complications, the remaining ten were 100% successful and stable.
The Valuechain Sickle Cell Foundation is open to collaborating with well-meaning individuals, partner agencies/organizations and the government in seeing how it could increase access to this cure. As part of the target of the foundation, there are plans to ensure full sponsorship of bone marrow transplant for at least one SCD patient per annum. The foundation will welcome and acknowledge donations toward supporting this course. We are hopeful that the foundation will remain instrumental to the establishment of national standards for the care of people with sickle cell disorder.
Account Name: VALUECHAIN SICKLE CELL FOUNDATION
Bank: Zenith Bank Plc
Account Number: 1017001585
Ibrahim Suleiman is the Coordinator of the Valuechain Sickle Cell Foundation