By Ehis Ayere
The Sickle Cell Aid Foundation (SCAF), a non-governmental organisation founded in 2010 by the young, passionate and determined Nkechukwu Azinge has indeed been phenomenally and evidently terrific in improving awareness on Sickle Cell Disorder (SCD) and ensuring enhanced and robust care for persons with SCD.
In this exclusive interview with Ehis Ayere and Victor Nosike, the founder of SCAF, Azinge discusses the successes and achievements of the foundation and the various measures developing countries can adopt to curb non-communicable diseases, such as SCD. Excerpt:
We are aware that the Sickle Cell Aid Foundation (SCAF) is a youth led Non-Governmental Organisation (NGO) focused on addressing Sickle Cell Disorder (SCD) and its complications in Nigeria. Kindly tell us more about SCAF.
The Sickle Cell Aid Foundation (SCAF) is a brainchild of young, passionate and determined persons with a strong conviction that access to information and healthcare should be a right and not a privilege for indigent persons born with sickle cell disorder (SCD).
We were resolute that access to quality healthcare and information would alter the pitiable state of events in Nigeria where over 100,000 children with SCD, die before their 5th birthday as a result of complications arising from SCD. To enable you understand this, 270 children die each day before they can celebrate their 5th year on earth. It is definitely more than just statistics, because every life matters. More so, it is an economic burden on families whose children, parent (s) or sibling (s) as the case may be, are hospitalised frequently and thus cannot function to their fullest capacity.
To this end, SCAF has initiated specific projects aimed at raising awareness, educating the indigent and ensuring that they have access to quality healthcare. The impact of our projects has amazed us as we have reached over a million Nigerians since our inception. Shows you how much impact young people can make when they are determined.
Research has shown that Nigeria has the largest population of people with SCD in the world, with over 150,000 babies born with the serious condition every year. Some statistics reveal that a good percentage of Nigerians particularly in rural areas are still not aware of SCD or its complications and many are ignorant of their genotype. How successful have you been raising awareness on sickle cell?
Your research is most definitely right, however there are no available national statistics to back up the level of awareness. In 2011, SCAF commenced by building these statistics to guide our intervention process; our pilot study in the FCT revealed startling results, 20% of her residents had never heard about SCD and 46.5% did not know their genotypes, indicating that residents who had some information about sickle cell were unwilling to test to know their genotype. Some held false beliefs, mentioning to us, ’sickle cell no fit dey my family’
Against this background, SCAF initiated two key projects in 2012; the Know Your Genotype Campaign (KYGC) and the Sickle Cell Club Scheme (SCCS). The KYGC entailed carrying out free genotype tests, counselling and awareness creation in the six area councils in the F.C.T. The SCCS saw the team set up sickle cell club set up sickle cell clubs in over 30 secondary schools across the FCT, reaching over 10,000 children with a curriculum prepared to guide their activities. We also carried out our KYGC projects within these schools and students found to have sickle cell were given free drugs and their tuition dues owed the school were paid.
Within two years, we carried out over 9, 000 test within the FCT and reached over a million people via our social media campaigns. These resulting in a 7% increase in awareness on SCD and its complications and 5% increase in the percentage of persons who know their genotype.
We are currently undertaking the necessary ground work to replicate these activities in other states to ensure that more people are aware of the implications of SCD. We however acknowledge the importance of self determination and the force of love, as such we are aware that our success in raising awareness cannot be measured by reduced cases of sickle cell disorder.
Findings reveal that only five per cent of the children with Sickle Cell Disease live past the age of 10 in Nigeria, compared to over 96 per cent surviving into adulthood in the United Kingdom and the United States. Please tell us the efforts and contributions of SCAF aimed at improving the access of SCD sufferers to quality healthcare.
The enviable life expectancy of persons with SCD in developed countries can be attributed to access to information and quality healthcare from the birth of every child. Conversely, this is not the case in Nigeria where SCD patients are not aware of their health condition until there is a major crisis. For instance, we’ve had patients with razor marks on their bodies, indicating visit to ‘native doctors’ as parents still hold beliefs in ‘Abiku/Obanje’ and in some cases there is the belief that their ‘enemies’ are against them. Delayed discoveries, coupled with the absence of a robust health insurance scheme no doubt contributes to premature deaths in SCD in Nigeria.
In combatting this, we have instituted the ‘SCAF Aid’ project tailored towards counselling and management of SCD cases. This project aids by advising pregnant women to test their babies prior to or immediately after their birth as there are centres in Nigeria that afford this opportunity. Early detection is key to effective management. We also provide free drugs, clothes, medical bills and medical advice. With the aid of our Ambassador, Ms Zahra Buhari, we distributed drugs to over 430 patients across 5 states over the 2015 Christmas break. Recently, we commenced sponsorship of urgent and life threatening surgeries for persons with sickle cell.
Realising that persons with sickle cell anaemia need frequent and sometimes urgent blood transfusion, we commenced the ‘Online Blood Registration Drive’. This project is aimed at generating thousands of registered blood donors to assist SCD patients and patients in emergency situations nationwide thus preventing further complications and death.
We also encourage parents to pay attention to the mental health of their kids whilst providing them with the educational funds and materials so they can compete favourably with their peers under our ‘Red Movement Scholarship Fund’ project. The need to lead a healthy lifestyle is also emphasised through our periodic sporting activities ‘SCAFlympics’.
We have also been pushing for mandatory health insurance for persons with SCD as access to healthcare usually denied by the absence of funds.
In these ways, SCAF is working towards ensuring that the life expectancy of persons with sickle cell is not determined by their geographical location but by their determination to live.
You are doing remarkably well and have received several awards, including been recognised by Queen Elizabeth of England for taking the lead in transforming the lives of others. How do you manage to achieve so much in relation to some of the challenges you face?
Being honoured by the Queen hardly sunk in till the exact moment. I was so overwhelmed i missed my steps whilst curtseying (laughs). To be honest it still feels surreal because I grew up with great admiration for the British monarch. I maybe fortunate enough to interact with various human rights activists and captains of industries, but there are few greater honours than being acknowledged for my service to the community by HRH Queen Elizabeth the II.
In terms of challenges, SCAF’s call to serve humanity however comes at a cost to the SCAF team – financially, emotionally and psychologically. This is unfortunately the part that is unseen to the public. We have had to sleep in villages or communities to gather accurate statistics and run our outreaches, we have had to wait in government offices for unending hours, we have encountered accidents, members have had crisis in the middle of project executions causing us to alter plans, and we have lost close friends and members to sickle cell disorder, we have gone so broke that we had to turn to family members and friends to assist patients in dire conditions.
In such periods of trepidations, we rest on hope. For we realize that the greatest privilege has been the ability to look into a child’s eye and give them hope – and it is the same hope that birth SCAF, it was the same hope that was breath into my twin sister in her times of difficulties, a prime motivation for the formation of SCAF. Thus we soldier on with the aim of ensuring that quality healthcare for the indigent with sickle cell disorder, is a right and not a privilege.
More so, the validation from the Queen’s Young Leader’s Award and the Washington Mandela Fellowship (by another member) in the same year alleviates our fears and lets us know that we are working in the right direction.
In your opinion, what measures can the government put in place to address SCD in Nigeria?
Various measures can be put in place to curb non-communicable diseases, including SCD. This would require a structured approach towards creating a system that appreciates the value of every Nigerian life – ensuring that every Nigerian has access to quality healthcare. Emulating NHS screening
For starters, a comprehensive national screening programme is necessary for early detection and effective management. Effective management is however dependent on access to quality healthcare, which numerous Nigerians are deprived of in the absence of a robust health insurance package. The poverty level turns numerous Nigerians to traditional medicine, which poses more harm than good. Ambulance services are also required to enable access to quality healthcare as we’ve encountered patients who do not even have funds to get hospitals and a non-specialist vehicle is not safe for transporting critically ill patients.
Health insurance and access to same is however invaluable in the absence of continually trained, motivated and respected medics and nurses.
These measures combined with a unified national awareness campaign against SCD, policies in place to ensure standardised care and non discrimination of persons with sickle cell would not only address SCD in Nigeria but ensure Nigeria’s compliance with SDGs goal 3 on good health and wellbeing.
Tell us about yourself and what inspired you to the job?
I am currently a doctoral candidate at the University of Warwick, United Kingdom where I double as a teaching and research assistant in the area of financial/trade regulation. I attained my Masters in International Economic Law with a distinction from the same University. Prior to my Master’s degree, I served at Securities and Exchange Commission which till date, serves as the most challenging and fulfilling work experience I’ve had. Interning with the International Bar Association (IBA) in London no doubt developed my work ethics and skillset. Attending the Nigerian Law School was one of the best decisions I’ve made as it not only gave me the opportunity to amass knowledge on Nigerian substantive and procedural law, it also gave me the opportunity to come home and start the Sickle Cell Aid Foundation (SCAF), an NGO formed during my final year at the University of Leicester in England.
My primary inspiration was born out of watching my twin sister undergo series of crisis in Nigeria. Her frequent crisis made me more disciplined and alert. Her health however dramatically improved when she moved to England. I became curious as to how the less privileged with sickle cell disorder get access to quality healthcare like my sister did. I was further perplexed by the lack of awareness and stigma attached to sickle cell disorder. It is for these reasons that i sourced out like-minded persons and together we started SCAF.
Philanthropy and giving back in Africa, seem to be an exclusive reserve of the super rich, and you are notable for your philanthropic strides in the continent. What is your view on philanthropy in the continent?
The notion that philanthropy can be seen to be the exclusive privilege of the ‘super rich’ is questionable. The term ‘super rich’ in itself is subject to various interpretations. Take for instance it means persons as rich as Dangote, that automatically means that at least 98 percent of Nigerians are not philanthropic. This is not the case. I certainly do not fall within the ambit of ‘super rich’ as SCAF commenced during my Undergrad days, and I am currently still at University… living on my student budget.
My perception however is that philanthropy is not deeply ingrained in the culture of our people or corporations. Nigerians and Africans as a whole usually have a certain distrust towards giving, especially through Non-governmental organisations. In the corporate world, it is regarded as corporate philanthropy aimed at addressing socio-economic developmental challenges – which in itself is not a wholly encompassing definition of corporate social responsibility. These attitudes to corporate social responsibility (CSR) can partly be attributed to the absence of institutionalisation through laws or decisions to persuade or mandate companies to engage in true CSR.
The tide is however changing, younger people within Africa are taking up altruistic projects, they are more daring and more creative – taking steps away from philanthropy into the realms of social enterprise aimed at empowering and changing the lives of others.
