Funmi Eko is the Chief Executive Officer, CocoTripps Productions, and currently runs RedConnectNg, a nongovernmental organisation. In this interview with Kayode Fasua, she said sickle cell anemia is most prevalent in Nigeria among countries of the world. Eko who lamented that at least 160,000 infant deaths occur yearly due to the public health challenge, also spoke on how her organisation hopes to tackle it. Excerpts:
How did your NGO mark the World Sickle Cell Day this year?
For ‘World Sickle Cell Day 2019’, RedConnectNg had an online interactive webinar tagged, “mental awareness and sickle cell.” Our target audience was mostly parents of children living with sickle cell anemia. Caring for a child with sickle cell anemia can be overwhelming, sometimes exhausting and most times, the caregivers are burnt out before realising they are saddled with this ill state of mind. So, it is important for the caregiver to take breaks and check out for signs of mental illness before it gets out of control.
How many persons living with sickle cell anemia do we have in Nigeria, Africa and worldwide?
Sickle cell mostly affects people of African descent with a ratio of one in 1000. It also affects people of Hispanic descent too. The reason it is most common in black people is due to the fact that our geographical regions are prone to malaria, and the gene variant of sickle cell disease is related to malaria.
Nigeria, unfortunately, is tagged the sickle cell capital of the world, and is also the top sickle cell endemic nation in Africa, with an annual infant death of about 160,000, representing more than eight per cent of infant mortality in the country. That is why it is very important to eradicate malaria, start newborn screening, and get the public properly educated about this disease.
How can government aid medical research to stem sickle cell anemia?
In battling this disease, awareness plays a major role. We need to reach rural communities with a clear and simply message of showcasing the disease in its entire enormity so that people can realise and accept the deadliness of it. Even in the urban areas, intending couples must test to know their genotypes and be given a foresight of life with sickle cell anemia. Also, regulatory and effective boards should be in place to checkmate health centres, and medical laboratories towards giving accurate diagnoses and care.
Doctors and nurses should be trained to specialise in the treatment and management of the disease, and strong affiliations should be made with foreign organisations and research centres that are endlessly working for a cure. Trainings should be made mandatory for medical professionals in that field.
Some religious bodies have forbidden their members from doing genotype test before contracting marriage. Do you think government should enact a law mandating all to comply with the genotype rule, to stamp out sickle cell?
As a country, we have allowed religion to interfere with governance too many times and this has hindered us in a lot of ways. Our government should put her foot down, that agreeing to comply with certain laws must serve as bond before any religious body can be registered to function. The wellbeing of her citizens should come first, as regards health and other sectors.
Are persons living with sickle cell getting enough attention from government?
Unfortunately, people living with sickle cell have not been getting adequate attention from our government over the years. There are lots of cases of wrong genotype diagnosis in couples that go ahead to have children with sickle cell disease, and cases of doctors and nurses not being knowledgeable in the treatment and care of sickle cell anemia. Government hospitals are trying their best but they are not fully equipped. Imagine a sickle cell ward in a hospital with no mosquito nets and we have a lot of them like that. So, if the basic amenities are not present, how can there be room for improvement?
For instance, children between the ages of two and 13 are at the risk of having stroke and must have a Trans Cranial Doppler Ultrasound to monitor blood circulation in the brain, as a prevention mechanism. Unfortunately, this scan is only done at the Sickle Cell Foundation, Idi-Araba, and they have just one scanner at their disposal. It is hard living with sickle cell in Nigeria.
Compare the average life span of persons living with sickle cell in the western world and those in Africa, especially Nigeria.
Life span for persons living with sickle cell all over the world has increased generally with the introduction of new drugs such as ‘Hydroxyurea’ and other medications. Non-smoking and no intake of alcohol also help. Maintaining a healthy body mass index and right nutrition also play a role. Gene therapy and bone marrow transplant give us hope too.
Compared to other countries like Jamaica and USA, Nigeria is still below average; but we should increase research and study people like Alhaja Laguda who is well into her 90s, even though she lives with the disease.
In what ways should government support NGOs addressing the challenge?
A merger between our government and credible NGOs needs to exist and be functional. The government can’t and shouldn’t be left alone in battling this disease. It clearly starts and ends with awareness in clear, simple terms and all hands must be on deck, from regulating our health sector to being more functional and accountable. President Muhammadu Buhari’s administration has the opportunity to right the wrongs of past administrations regarding the health sector. The government should put effective policies in place that will yield continuous success stories, and aid in research toward a lasting solution to this disease. First aid and Basic CPR should be taught in schools and work places. Again, malaria needs to be eradicated just like it has been done in other countries.