In Nigeria, June 19 every year is designated to mark the World Sickle Cell Day . The international awareness day is observed annually with the goal of increasing public knowledge and an understanding of sickle cell disease and the challenges experienced by patients and their families and caregivers.
Sickle Cell Disease is a blood cell 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 sufferer does not have enough healthy red blood cells.
Treatments include medication, blood transfusions and rarely a bone-marrow transplant. People with sickle cell are also at risk of complications 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.
Disturbingly, according to a report, over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell in the country. Nigeria has the highest rate of sickle cell disease in the world. One in two babies born with SCD is a Nigerian. Also only five percent of children born with sickle cell live past the age of 10 in Nigeria. This is frightening.
Sadly, the awareness for sickle cell in Nigeria is abysmally low . In most communities, most Nigerians are still unaware of the disease.
Checking for sickle cell is simple but key. A genotype test will show whether a person has the carrier gene, AS, and as long as carriers do not jointly produce a child, no one will be born with sickle cell.
Sadly,there are reports of couples forging their genotype and phenotype test results to enable them get married.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 counseling and warnings, most couples ignore doctors’ advice and still get married.In the considered opinion, the government should make it a criminal offence 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 newborns in hospitals. The testing should be accessible, free and compulsory for all aspiring couples and newborns. The earlier the parents or caregiver start managing the sickle cell patients, the better .Management is of the disease is key . Parents and caregivers need to know what do and how to respond to complaints from SCD patients.
The government should also redouble its efforts in spreading the awareness of the danger of the diseases .There needs to be a clear government policy on sickle cell like for cancer and HIV.
Regrettably, a majority of Nigerians, especially in the rural areas, are still not aware of the diseases as many of the communities do not 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 there is a major breakthrough in the treatment of Sickle Cell Disease (SCD) with the approval of Crizanlizumab by the National Health Service (NHS) in England. NHS in England has secured a deal to make the life-changing revolutionary treatment available for up to 5,000 patients over the next three years.
The drugs works by binding to the proteins on the red blood cells, which tend to clump together, causing a degree of blockage within the arteries, and it is that blockage that then limits the blood supply and oxygen supply, which causes profound and excruciating pain to such people.
According to experts, by having access to this drug, people will have an improved quality of life. The rates of hospital attendance to accidental emergency will be reduced by 40 per cent due to the availability of this drug.
Consequently, efforts should be made by government, private individuals and non- governmental organisations to establish a bone marrow transplant centre in at least all the geopolitical zones in the country.
Also, the government, wealthy private individuals, and corporations can assist with the funding for research and also make money available for people who cannot afford the breakthrough drug.
The government should also make available sickle cell emergency care centres dedicated to handling sickle cell emergencies, as well as encourage more health care workers to go into specialties that take care of sickle cell patients by giving such workers incentives.