In Nigeria, June 19 of every year is designated and marked as World Sickle Cell Day (SCD). The international awareness day is observed annually as part of activities mapped out to increase public knowledge and understanding of sickle cell disease, as well as the challenges experienced by patients, their families and caregivers.
Science explains sickle cell disease as a disorder that causes the red blood cells to take on a sickle or moon shape due to an abnormality in the oxygen-carrying protein called Haemoglobin. Because of their shape, these cells stick to vessel walls and block the flow of blood, preventing proper circulation of oxygen. The result is that the patient does not have enough healthy red blood cells.
Treatments include medication, blood transfusion and rarely a bone-marrow transplant. People with sickle cell are also at risk of complications such as stroke, acute chest syndrome, blindness, bone damage and priapism.
Over time, people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.
Available information on the disease indicate that over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell. Nigeria has the highest rate of sickle cell disease in the world. One in two babies born with SCD is a Nigerian. Also in Nigeria, only five per cent of children born with sickle cell live past the age of 10. These statistics are, indeed, scary and points to the urgency of enhanced resource allocation, information dissemination, public enlightenment preventive measures, management and control of this ailment.
As it is presently, the awareness regarding the disease and its implication for a healthy living are, sadly, abysmally low. Curiously, due to insufficient knowledge of the disease, the cause is, in some communities, attributed to primitive and primordial influences like witchcraft.
But preventing the disease is not rocket science as a simple blood test is all that is required to trace it. A genotype test will show whether a person has the carrier gene (AS), and as long as carriers do not partner up with each other, no child will be born with sickle cell. So simple yet due to ignorance the ailment continues to be perpetuated.
In some inexplicable situations, couples forge their genotype and phenotype test results to enable them get married only to end up unleashing horror on themselves. Usually, medical practitioners advise that anyone with the AS genotype should find partners with the AA genotype as that ensures that none of their children will have sickle cell disease.
Despite counselling and warnings, most couples ignore doctors’ advice and still get married. In the considered opinion of this newspaper, the government should make it a criminal offense for sickle cell carriers to get married.
It is from this perspective that we call on the government, at all levels, to make testing for sickle cell mandatory for all new born babies in hospitals. The testing should be accessible, free and compulsory for all aspiring couples and new born. The earlier the parents or caregivers start managing the sickle cell, the better. Management is key.
The government should also redouble its efforts in spreading the awareness of the danger of the disease .There is need for a policy on sickle cell like for cancer and HIV.
Regrettably, majority of Nigerians especially in the rural areas are still not aware of the diseases as many of the communities don’t have access to health facilities. Also, the treatment for sickle cell which is bone marrow transplant involves replacing damaged cells in the body with healthy ones. However, it is expensive and out of reach for the common man. It is gratifying to note that Sickle Cell Foundation Nigeria (SCFN) and the Lagos University Teaching Hospital (LUTH) had last year announced the signing of an MoU formalizing their partnership to establish the first Comprehensive Bone Marrow Transplant (BMT) Centre in Lagos.
Eventually, there will be a compelling need for the government, private individuals and non- governmental organizations (NGOs) to establish bone marrow transplant centres in at least all the geo political zones in the country.
The government should also make available sickle cell care centres dedicated to handling sickle cell emergencies. Even more importantly, the health authorities should encourage more health care workers to go into specialties that take care of sickle cell patients by giving such workers incentives.