TAMING THE MENACE OF SICKLE CELL

Gideon Arinze argues that the government could do more in order to subdue the disease

Sickle cell is a global health issue that is not as well known as malaria. But every year, thousands of babies are born with the disorder. And the number is expected to increase by about 30 per cent 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 with vaccines and antibiotics as well as routine checks for adult who are with the disease.

Researches have shown that Nigeria has the highest burden of Sickle Cell in the whole of Africa. A report by the World Health Organisation (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 in not just Africa where the disease is most prevalent, but the entire world. Most saddening however is the fact that the government in Nigeria has not made 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 a national newspaper, a lot of carriers of SDC cannot afford the cost for medical treatment. As a result, they refuse to open up for fear of being stigmatised. The result of such increasing frustration and stigmatisation in the absence of a commensurate improvement services is the death of such carriers which continues to affect childhood mortality in the country.

A study by the Sickle Cell Aid foundation has further shown that only five per cent of the children with sickle cell disease live past the age of 10 in Nigeria as most of them die before their fifth birthday as a result of complications arising from SDC.

Nigeria with a population of over 180 million has about 25 per cent of its adults representing over 40 million having sickle cell traits. One million persons also leave with the sickle cell disorder. According to the director, Comprehensive Sickle Cell Centre in Ghana, Professor Kwaku Frempong, “there is no country in Africa that has a programme for new born screening”.

The Chairman of the Sickle Cell Support Society of Nigeria, Prof. Adekunle Adekile at a conference by SSCN 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 health centres.

How then can the government and non-governmental organisations as well as other interested individuals help to tackle the disorder?

Prior to the 1970s, the survival rate for sickle cell patients in the US was as low as it is in Nigeria. 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 died as a result of the sickle cell 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. In 1972, $10million was used to expand sickle cell programmes. In March 1972, President Nixon proposed that the funding level of SDC be raised to 15million.

In the last 50 years, survival rate has improved for people with SDC in the United States. Their average life expectancy in the 1970s was 20 years. 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 improvements have been attributed to several interventions including widespread newborn screening programmes 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.

The United States was able to control the scourge of SDC because its government was committed. It is important 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 it.

To begin with, measures aimed at enhancing the sensitisation of health practitioners, especially in the local communities and policy makers 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 recognising the SCD, making diagnoses and doing health education as well as counseling and to also know when to give patients supplements to boost their blood.

The government should establish programmes for new born screening which involve appropriate identification of the trait in infants. And when such traits are discovered, the children should be taken to good health centres where they are treated. When babies are routinely screened for the disorder and the right care given, they can live well into adulthood.

Couples also have a role to play in reducing 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.