Sickle cell disorder has robbed me of my children and happiness; it has taken away all I have and turned my family to beggars,’’ says Pastor Abel Adewale, a Lagos-based cleric.
“This disorder killed two out of my five children and it is still threatening the lives of the remaining three because they all have the ‘SS’ genotype.
“I cannot continue to watch them suffer and die for what my wife and I caused as a result of our ignorance. I have sold all that I have to make sure that they stay alive.’’
These are the agonising words of the priest, whose genotype and that of his wife is “AS’’.
Adewale’s trauma started in 2001 when his first child died at the age of 10, while another child died nine years later in 2010.
He laments that the condition of his remaining three children is also critical.
Adewale is just one of many Nigerian parents undergoing similar harrowing experience, as it is estimated that more than five million people in the country are suffering from the genetic disorder.
But the situation is a global phenomenon, as the World Health Organisation (WHO) says that about five per cent of the world’s population carries the trait genes for haemoglobin disorders, mainly sickle-cell disease and thalassaemia.
Haemoglobin disorders are genetic blood diseases that emerge due to the inheritance of mutant haemoglobin genes from both, generally healthy, parents.
The WHO notes that over 300,000 babies with severe haemoglobin disorders are born each year, adding, however, that the health burden of haemoglobin disorders can be effectively reduced via management and prevention programmes.
However, Dr Alayo Sopekan, a Desk Officer (Sickle Cell Disorder) in the Department of Public Health of Federal Ministry of Health, said that over 40 million Nigerians were healthy carriers of the sickle cell gene.
“Nigeria, by the virtue of her population, ranks first as a sickle cell endemic country in Africa with annual infant deaths totally around 100,000, eight per cent of infant mortality in the country,’’ he said.
Narrating his plight as an SS carrier, Olamide Odule, 23, recalled that when he became aware of his status, he cursed his parents for being responsible for his unending suffering.
He said that he usually experienced crises on a monthly basis, adding that this had made him a regular visitor to the hospital.
“I usually experience severe pains in my bones and this compels me to live my life as if I am going to die the next minute.
“I spend at least 10 days in the hospital every month. In fact, I wrote some of my WAEC and NECO papers at the hospital.
“I have tried to commit suicide twice because my situation has made life worthless for me,’’ he said.
Odule, however, conceded that the situation somewhat changed when he joined a Sickle Cell Club at Idi-Araba, Lagos, “as I started mingling with people of my kind, and I later realised that suffering from sickle cell anaemia is not a death sentence’’.
The tales of people suffering from the sickle cell disease will definitely evoke a deep sense of compassion and their harrowing experience has somewhat compelled the federal and state governments to set up intervention programmes to assuage their suffering.
This is partly because sickle cell anaemia is one of 10 major non-communicable diseases causing significant disability, morbidity and mortality in the country.
However, there are ongoing researches at the National Institute for Medical Research (NIMR), Lagos, to find a cure for the sickle cell disease, while the National Institute for Pharmaceutical Research and Development (NIPRD), Abuja, is also working in that direction.
Besides, government, churches and non-governmental organisations are carrying out structured advocacy programmes, counselling patients and intending couples.
In some churches, intending couples are not even allowed to wed without tendering results of medical tests confirming their genotype status.
Counsellors are also trained to offer counselling services to patients, while efforts are made to facilitate better management of the disease with free or subsidised drugs.
To mitigate the burden of sickle cell disorder in Nigeria, the Federal Government established six Sickle Cell Centres across the country.
These are the Federal Medical Centre, Lagos, set up to cater for South-West geopolitical zone, and the Federal Medical Centre, Gombe, set up for the North-East zone.
The Federal Medical Centre in Keffi is expected to cater for the North Central zone, while the Federal Medical Centre, Birni-Kebbi, is for the North-West.
The Federal Medical Centre in Yenagoa is expected to look after the health care of sickle cell patients in the South-South zone, while the Federal Teaching Hospital, Abakaliki, is for the South-East.
Until recently, it is generally believed that there is no cure for sickle cell disorder but medical advancements have proved that stem cell transplant can be used to cure the disease.
However, the cost of the surgical procedure, which could only be carried out on persons under the age of 15, is very much prohibitive.
Prior to 2012, the management of sickle cell disease involved simple procedures such as high fluid intake, healthy diet, folic acid supplementation, pain medications, vaccination and antibiotics for the prevention and treatment of infections, among others.
All the same, the only cure remains “stem cell transplantation’’ (bone marrow transplant); a feat recently achieved at the University of Benin Teaching Hospital (UBTH) by Dr Nosakhare Bazuaye, a Consultant Haematologist.
The university had invested about N40 million in equipping an existing structure where the surgery is carried out but observers lament that government and philanthropists are apparently not showing enough interest in supporting the innovation.
At UBTH on July 31, 2012, seven-year-old Matthew Ndik was presented as the first sickle cell patient to undergo a stem cell transplant in West Africa.
His brother, Emmanuel, reportedly donated the bone marrow for the stem cell transplant.
Bazuaye, who led other doctors to perform the transplant, said that Matthew’s presentation took place 100 days after stem cell transplant was successfully carried out.
He announced that Matthew’s new genotype was now “AA’’ and said that more than 20 sickle cell patients were already lined up for the stem cell transplant.
He, however, lamented that the hospital facilities could only take in one patient at a time, adding that about N6 million would be required to treat a patient.
Bazuaye urged the Federal Government to provide support for the stem cell transplant to enable four patients to undergo the surgery every year.
But there is a proviso: Bazuaye has threatened to return to Europe if he could not get support for his efforts to perform the transplant on Nigerians suffering from sickle cell disorder.
Bazuaye’s threats tend to elicit certain questions:
Should Bazuaye be allowed to go back to Europe and continue with his practice there? Why is the government not able to identify with UBTH in pushing for the continuity of the therapy? Is the feat not worth celebrating by the government and people of Nigeria?
The answers to these queries will definitely throw up a food for thought but concerned observers underscore the need for the government, organisations and affluent citizens to support the innovative therapy for sickle cell disorder in the country.
All the same, Mrs Doris Gbemiloye, the Executive Director, Genotype Foundation (GF), said that the innovation would aid efforts to mobilise the people not to stigmatise or abandon those living with the condition, especially ladies who usually have problems in getting prospective suitors.
To increase public awareness, Gbemiloye stressed the campaign against sickle cell anaemia should be expanded to cover schools, as there was a growing need to sensitise more pupils and students to the need to know their genotype.
“When they grow up, they will be able to make the right decisions about their spouses, they will be able to appreciate the fact that marriage is not all about love,’’ she added.
Besides, Gbemiloye urged the government to increase funding for research on sickle cell disorder, while upgrading existing facilities used in treating people living with disease.
In her remark, Princess Nike Opalemo, the founder of Nike Opalemo Sickle Cell Foundation, said that a time would come when children living with sickle cell disease would start suing their parents for negligence.
“They would sue them for bringing them into the world and making them to suffer.
“This is because they suffer stigmatisation, job discrimination, frequent illness, depression, lack of access to standard treatment due to financial constraints and frequent blood transfusion,’’ she said.
Opalemo, nonetheless, urged people suffering from sickle cell disorder to go for regular checkups, eat balanced diets, have adequate bed rest and adopt sound hygienic practices, so as to enable them to manage the disorder effectively and live longer.
She also urged the Federal Government to include sickle cell treatment in the National Health Insurance Scheme (NHIS) in order to subsidise the cost of treatment because many people could not afford it.
She noted that the prohibitive cost of treatment had contributed to the high death rate among the patients.
“The demonstration of political will and the allocation of adequate resources are vital, while steps should also be taken to curb the growth in the number of people suffering from the sickle cell disease in the country,’’ she said.
All in all, observers urge the government to play more active and pragmatic roles in efforts to control the disease.
Lucy Osuizigbo writes for News Agency of Nigeria (NAN)