Sickle cell disease is the most prevalent genetic disease in the World Health Organization’s (WHO) African Region. The blood disorder is said to affect 20-25 million people globally, and 50-80 percent of infants born with SCD in Africa die before the age of 5 years.
In this interview with YNaija’s Impact365, Bukky Bolarinwa takes us through some of the challenges faced by sickle cell warriors in Nigeria, the mission of Sickle Cell Aid Foundation, its achievements over the years and today’s blood donation exercise.
Please tell us about Sickle Cell Aid Foundation.
SCAF is a youth led non-profit organisation established in 2010 to raise awareness about Sickle Cell Disorder (SCD) in Nigeria. Nigeria records the highest incidence of SCD globally with over 150,000 children born with SCD annually, out of which 100, 000 die before the age of 5. This indicates that there is still a lot amiss regarding awareness and delivery of medical care for SCD, especially the young and indigent. In recognition of the socio-economic burden of SCD in Nigeria, SCAF works to correct this undesirable position.
In 2012, SCAF commenced the Know Your Genotype Campaign (KYGC) through carrying out free genotype tests, counselling and awareness creation in the six area councils in the F.C.T. The KYGC has expanded to 8 states and we have carried out about 10,000 free tests. In addition, SCAF runs the Sickle Cell Club Scheme (SCCS) to set up sickle cell clubs in 20 secondary schools where we also carried out free genotype tests. Students found to have SCD were placed on free drugs and their tuition fees paid. We also set up Haima Health Initiative, the first of its kind in Nigeria allows Nigerians to register to donate blood within their locality to be used for free by SCD patients and in emergencies. In addition, we work as a patient support group to aid sufferers with free drugs, hospital bills, and emotional support.
These achievements, however humble have gained us numerous awards including the Queens Young Leaders Award (presented by the Queen of England), the Future Awards Africa, and various fellowships. More so, Ms Zahra Buhari, daughter of the President, and Musician Adekunle Gold have come on board as brand ambassadors. SCAF has about 200 volunteers spread across various states in Nigeria and our activities have reached over 20,000 people.
What was that unique experience that inspired you to set up the NGO?
SCAF was set up by my friend Nkechi Azinge in 2010 at the Nigerian law school in Bwari. I joined her in 2011 and we have grown the team to achieve significant goals. Nkechi started SCAF because she has siblings including her twin sister living with sickle cell and experienced first hand the challenges it brings. I joined because I have SCD and needed an avenue to improve information on SCD and help others living with it to get the support that I had been privileged to get.
What are the common myths about sickle cell that Nigerians need to unlearn?
There are a number of myths surrounding SCD in Nigeria which we aim to correct. Firstly, the term “sickler” which is used to describe people living with SCD has a negative connotation and is used as a derogatory term. We use the term “Sickle cell Warrior” to signify the high number of medical challenges that people living with SCD have to overcome on a daily basis, the most common of which is frequent sickle cell crisis.
Secondly, people generally believe that those living with SCD are frail and have a short life span leading to discrimination that impacts jobs and relationships. While it is well known that the disease inhibits lives in many ways, it is in no way a death sentence. We recently celebrated the 90th birthday of a warrior in Lagos, showing that with adequate care, it is possible to live a long, healthy and fulfilled life with SCD.
Finally, it is important for Nigerians to know that SCD cannot be transferred to others as it is a genetic disease and can only be passed by birth.
Tell us more about your blood donation exercise set to hold tomorrow?
As part of our mandate, we set up Haima Health Initiative (HHI) to help Nigerians understand the importance of blood donations. Sickle cell warriors often need blood transfusions and we started this to help get blood donors as they are often shortages. We have expanded the project so that we provide blood to all patients in need at no cost. Blood is an essential part of health care delivery for so many patients including delivering mothers, cancer, anaemia, accident and emergencies. Haima also hosts monthly blood drives in different states to ensure that our blood banks are constantly filled with all blood groups.
Today, we will be holding a Valentines Blood Drive to encourage people to give blood as the perfect gift from the heart. Blood donation is a simple, painless process that takes about an hour. It is completely safe and health checks are done to ensure a person is eligible to donate. All the blood is screened before being given out and each pint donated has the potential to save three lives. It also has great benefits to the donor including improving the heart and weight loss. It will be at Idea Hub, 296 Herbert Macauly road, Yaba in Lagos from 10am to 4pm.
What are your targets or what do you intend to achieve with this upcoming programme?
We intend to get as many young and first time donors to develop the culture of regular, voluntary and non-remunerated blood donation. Blood can be donated every four months and we aim to get people to adopt this as a civic responsibility that is free and saves lives. We also intend to get donors to sign up to our online blood register so we can call on them during emergencies to help donate. If you are unable to attend, please visit www.haimahealth.org.ng/donor to register as a voluntary blood donor and we will also keep you informed of upcoming events.
Can you say that people living with SCD in Nigeria get proper medical care and attention?
Health care delivery is poor for ALL Nigerians, especially the poor. It is the reason why rich Nigerians fly out for medical care for the slightest thing. For sickle cell warriors it is particularly poor because SCD requires multi disciplinary care. In 2016, we lost 4 of our members to SCD complications and we think their deaths could have been avoided with better medical care.
How did you get the wife of the Vice President, Dolapo Osinbajo to campaign with you?
The wife of the VP Mrs. Osinbajo started working with us in 2016 through our ambassador Zahra Buhari. She is passionate about increasing awareness on SCD and supporting SCD warriors and is also a mentor to us. We collaborate with her on her Step Up Campaign to carry out free genotype test through our Know Your Genotype Campaign (KYGC). We have a lot of exciting projects planned for this year.
Are you satisfied with SCAF’s reach and what plans do you have to expand your work?
We are very proud of our achievements and growth since inception, especially the help we have rendered to our warriors. However, we are only just getting started! We have plans to expand our work to more states, reduce stigma, increase our online blood register and raise more funds to help our beneficiaries. We will only be satisfied when we can achieve zero deaths due to SCD so we still have a lot of work to do!
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