Funmi Eko is a multitalented personality who has built a career in broadcasting, as well as in the radio and TV production industry, a journey which has spanned almost two decades. She is the Chief Executive Officer of CocoTripps Productions, associate member of WIMBIZ, and a board member of Lilly Ville Management Company. Born in Jos, Plateau State, she hails from Idoani in Ondo State. Eko runs ‘RedConnectNg’, a social enterprise that aims to educate and guide parents, caregivers, and patients of sickle cell anaemia towards living a stable, productive and long life. In this interview with SAMUEL FASUA, she unfolds her agenda in the war against the sickle cell disease. Excerpts:
How did your NGO mark the World Sickle Cell Day of June 19, 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 anaemia, to focus on their state of mind. It cannot be dismissed that caring for a child with HbSS can be overwhelming and sometimes exhausting and most times, the caregiver is burnt out before realising they are saddled with this ill state of mind. So it’s important for the caregiver to take breaks and check out for signs of mental illness, before it gets out of control.
Personal appraisal should be taken at intervals, speaking with a counsellor or specialist on how to de-stress and activate living mechanisms. Such should be looked into, to help the caregivers.
Statistically, what is the average number of sickle cell anaemia patients globally, and how many can be found in Africa, and narrowing it down home, in Nigeria?
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 sickle cell is most common in black people is due to the fact that our geographical regions are most prone to malaria, and the gene variant of sickle cell disease is related to malaria.
Nigeria, unfortunately, is tagged as the sickle cell capital of the world, and is also the top sickle cell endemic in Africa, with an annual infant death of about 160,000, representing more than eight percent of infant mortality in the country.
That’s why it is very important to eradicate malaria, start Newborn screening, and get the public properly sanitised about this disease.
In what way do you think government can aid medical research to stem the tide of sickle cell anaemia?
In battling this disease, awareness plays a major role. It can’t be overemphasised, reaching the rural communities with a clear and simply message: showcasing the disease in its entire enormity so that our 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 anaemia.
Also, regulatory and effective boards should be in place to checkmate health centres, hospitals 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. Besides, attending conferences and training sessions should be made mandatory for medical professionals in that field, solely.
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.
Do you think sickle cell patients have been getting enough attention from the Nigerian 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 that end up having children with HbSS, and cases of doctors and nurses not being knowledgeable in the treatment and care of sickle cell anaemia. 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 TCD scan (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 in Lagos, and they have just one scanner at their disposal! So it’s hard living with sickle cell in Nigeria.
Kindly compare the average life span of sickle cell patients in the western world with those in Africa, especially Nigeria. And state why?
Life span for sickle cell patients all over the world has increased generally with the introduction of new drugs such as ‘Hydroxyurea’ and other medications. Not smoking, 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, has sickle cell disease and lives in Nigeria; and others just like her, to aid caring and educating people with the
disease.
In what way do you think government should support the NGOs given to advocacy against the sickle cell anaemia?
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. In upgrading the standards of advocacy against the disease from what it is today to reach our people in the grassroots, we need fresh orientation as per the myths and traditions, and a general update in healthcare, especially in the pediatrics. Educating parents and caregivers about what to expect and do during sickle cell crisis, knowing the medical numbers, hydration, basic questions that should be asked during treatment or care-all these and more need to
be taught.
How supportive are the Buhari administration and the various state governments in efforts to stem the tide of the sickle cell anaemia?
The Buhari administration has the opportunity to right the wrongs of past administrations regarding the health sector, 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.
