by Gideon Arinze
Until the government steps up measures to tackle sickle cell, it will continue to ravage the country.
Sickle cell is a global health issue that is not as well known as malaria or tuberculosis. But every year, thousands of babies are born with the disorder. And the number is expected to increase about 30 percent globally by 2050 according to a study by Fred Piel, an evolutionary Biologist at Oxford University.
The study also reveals that the disorder is more in countries of Sub-Saharan Africa, with the due countries of Nigerian and Democratic Republic of Congo having the highest number of sickle cell cases.
A disease that is got from inheriting two copies of a defective gene, one from each parent, Sickle cell has no cure. But its deadly complications can be prevented by screening new born babies accompanied by vaccines and antibiotics as well as routine checks for adults who have the disease.
Sickle Cell in Nigeria, the stark reality
Research has shown that Nigeria has the highest burden of sickle cell in the whole of Africa. A report by the World Health Organization (WHO) reveals that Nigeria accounts for about 70 per cent of infant sickle cell cases in the continent with over 100,000 children dying from the disease every year.
Sadly, this is the highest burden, not just Africa where the disease is most prevalent, but in the entire world. Most saddening however is the fact that the government in Nigeria has not made determined efforts towards improving the survival rate of people with the disease. There is no comprehensive national policy for the control of people with the disorder.
According to a report by the Guardian, a lot of carriers of SDC come from not-well-to-do homes and cannot afford the cost of medical treatment. As a result, they refused to open up for fear of being stigmatized. The result of such increasing frustration and stigmatization in the absence of a commensurate improvement services is deaths and even more deaths of such carriers which continues to affects childhood mortality in the country.
A study by the sickle Cell Aid foundation have further shown that only 5 percent of the children with sickle cell disease live past the age of 10 in Nigeria as most of them die before their 5th birthday as a result of complications arising from SDC.
Nigeria with a population of over 180 million and an annual growth rate of 3.2%, has about 25 percent of its adults representing over 40 million having sickle cell traits. One million persons also leave with the sickle cell disorder.
Speaking during a conference organized by the Sickle Cell Support Society Of Nigeria, the Director, Comprehensive Sickle Cell Centre in Ghana, Professor Kwaku Frempong said that there is no country in Africa that has a programs for new born screening.
According to the professor, SDC has very broad manifestations apart from yellow eyes, stunted growth and early deaths. He observed that it is the leading cause of stroke in children, noting that Africans only have a narrow view of the disease.
The theme of the conference was: Reducing the burden of sickle cell disease in our communities. It would not have come at a better time than now when there are increasing cases of the disease with many dying as a result of lack of proper care and treatment.
The Chairman of the Sickle Cell Support Society of Nigeria, Prof. Adekunle Adekile remarked that the problem of sickle cell is so pervasive and many of the patients leave in the rural areas where they don’t have enough care in their tertiary and secondary health centers. According to him, there has not been much efforts to have a centralized diverse attention given to the disease which is why it keeps ravaging the country.
How then can the government step up measures to tackle the situation. What role can Non Governmental Organizations also play to help ameliorate the plight of the carries of the sickle cell disease especially those who come from less privileged homes?.
A look at the United States of America
Prior to the 1970s, the survival rate for sickle cell patients in the US was as low as it is in Nigeria. People were dying. According to a Public Health Report on a study conducted on mortality rate and age at deaths from sickle cell disease in the US, a total of approximately 90,000-100,000 Americans, majority of whom were African Americans died as a result of the sickle cell disease. It was largely due to the neglect of the disease.
In 1971, the administration of Richard Nixon- the 37th president of the United States reversed the record of neglect of the disease through the signing of the National Sickle Cell Anemia Control Act into law. To achieve the feat, ＄10million was used to expand sickle cell programs in Fiscal 1972 a tenfold budget increase over fiscal 1971. In March, 1972. President Nixon proposed that the funding level of sickle cell anemia be raised to ＄15million.
In the last 50 years, “survival rate has improved dramatically for people with SDC in the United States. Their average life expectancy in the 1970s was 20 years of age. By the early 1990s, the cooperative study of the disease estimated a median life expectancy of those with sickle cell anemia, the most severe form of the disease, of 42 years for males and 48 years for females”. Now, over 96% of children survive into adulthood in the United states and the United kingdom.
The dramatic improvements has been attributed to several interventions in early childhood, including widespread newborn screening programs, the use of penicillin prophylaxis and the use of Pneumococcal vaccination. In the last 15 years, Hydroxyurea- a medication that is used to reduce the number of painful crises caused by the disease and to reduce the need for blood transfusion has also become available for the treatment of SDC.
What should be done in Nigeria
The United states was able to controlled the scourge of the disease because its government was committed. While it has been discovered that sickle cell is not infectious- got from exposure to toxin, infection, virus or parasite but genetic, it is necessary that the government take adequate control of patients with the disease and those who are discovered to have the trait. How then can these be done?
It is pertinent to note that a child with sickle cell is not wasted. The disease is not a death sentence except nothing is done to properly tackle the it. Thinking outside the box, being innovative are therefore critical to reducing the burden of the disease.
To begin with, measures aimed at enhancing the sensitization of health practitioners, especially in the local communities, policy makers and other resource allocators to the pertinent issues in the control of Sickle Cell Disease must be stepped up. The training of health workers for instance, will assist them in recognizing the SCD, making diagnoses and doing health education as well as counseling and to also know when to give patients supplements to boost there blood.
The government must as a matter of urgency establish programs for new born screening which involves appropriate identification of the trait in infants. And when such traits are discovered, the children should be taken to good health centres where the are treated. When babies are routinely screened for the disorder and the right care given, they can live well into adulthood.
There is also the need to create sickle cell Centres to give care to the patients and to also carry out good research to discover certain curative measures after which the government will pay for those who are unable to afford money for the treatment.
Apart from efforts by the Government, NGOs and other interested individuals, the general public, especially couples have a critical role to play in tackling the scourge of SDC. Irrespective of their love, they should always go for their genotype testing in hospitals before marriage to avoid giving birth to children who would leave with the trauma all through their lives.
Op–ed pieces and contributions are the opinions of the writers only and do not represent the opinions of Y!/YNaija