Nigeria records the highest incidences of the sickle cell gene and disease globally with 150,000 children born with SCD each year and 100, 000 of them die before they are 5, because of her personal experience with Sickle Cell and her passion to create greater awareness and support for people living with Sickle Cell Disease (SCD), Bukola Bolarinwa joined her friend Nkechi Azinge as a partner to run Sickle Cell Aid Foundation (SCAF) , a non-governmental organisation established to raise awareness about sickle cell disease and related health conditions. While Nkechi is the founder of the organisation, Bukola works in the capacity of the President . Because she knows how important blood is to health care delivery system in Nigeria, Bukola founded Haima Health Initiative, to support hospitals who struggle to find blood in a safe and timely way because of the absence ofblood donors. She shares her inspiring story and the work she is doing through HHI in this interview
I think my challenges as a child made me resilient. I always had a passion for human rights growing up and our motto in my Primary school was “thoughts for others”. This stuck with me and influenced my personality today.
I am a lawyer, Advocate, president of the Sickle Cell Aid Foundation (SCAF) and founder of Haima Health Initiative. I joined SCAF in 2011 at the Nigerian Law School in Bwari where it was set up by my friend Nkechi Azinge. We both had personal experiences with Sickle Cell and wanted an avenue to create greater awareness and support for people living with Sickle Cell Disease (SCD). Nkechi’s three siblings live with SCD and she knows first hand the emotional, physical, psychological and financial burden it places on families. She started SCAF to support those who do not have the kind of support her family does. I live with SCD and I have also been lucky to have an excellent support system of family and health care providers but I know this is not the case for majority of people in Nigeria. So we work together with an amazing team of staff and volunteers to carry out activities to raise awareness about SCD and aid those living with it.
Being a Lawyer
I have not stopped practicing per se, I definitely always see myself as a lawyer first and I am hoping to go back into it at a later date. For now I dedicate my time to SCAF and Haima because there are a number of projects we are working on which would be impossible to juggle with practising law full time.
Sickle Cell Aid Foundation(SCAF)
The Sickle Cell Aid Foundation is a youth led non-profit, non-governmental organisation established to raise awareness about sickle cell disease and related health conditions. Nigeria records the highest incidence of the sickle cell gene and disease globally with 150,000 children born with SCD each year and 100, 000 of them die before they are 5. This indicates that there is still a lot amiss regarding awareness and delivery of medical care to people who have SCD, especially the young and indigent.
In 2012, SCAF commenced the Know Your Genotype Campaign (KYGC) which involves carrying out free genotype tests, counselling and sensitisation in the F.C.T. We have so far carried out about 10,000 free genotype tests across 5 States in Nigeria and it remains the largest on-going campaign on sickle cell advocacy in Nigeria. Our activities have reached over 15,000 persons across Nigeria. In addition, SCAF runs the Sickle Cell Club Scheme (SCCS) to set up sickle cell clubs in secondary schools where we also carry out free genotype tests. Students found to have SCD were placed on free drugs and their tuition fees paid.
Haima Health Initiative(HHI)
I started Haima Health Initiative because our Sickle cell beneficiaries often need blood transfusions and would ask us to get them donors. Most hospitals does not have blood in stock or they require a replacement for the one they use. We started by calling our friends and families to donate at hospitals and as more people started heard about us, we decided to help as many people as possible get blood. Haima is the Latin word for blood and is the first of its kind in Nigeria. We have an online database which allows people to register as voluntary blood donors that can be called on in emergency situations. We currently have about 500 registered donors across 8 states in Nigeria who have donated over 300 pints of blood free of charge directly to patients. The goal is to increase the number of voluntary blood donors and create a culture of donation devoid of superstition especially amongst young persons.
What Inspires me
I am inspired by so many things and people. I am inspired firstly by my mother who has taught me patience and perseverance during adversity. I am inspired by Nkechi who is extremely focused and innovative at such a young age. But most of all, I am inspired by people living with SCD and other health conditions in Nigeria who face unimaginable obstacles trying to survive. Living in Nigeria is very stressful for able bodied persons, but living with a disease, disability or physical challenge is a hundred times worse. Inspite of these, we are often the most positive, ambitious and vibrant people you will come across!
My projects and Activities
We have recently published our school’s handbook on SCD which is a fun activity book for teenagers. We are working with the Ministry of Education to incorporate it into as many Government secondary schools as possible as an after school sickle cell club. We are doing this because sickle cell education has to start from a young age to ensure every child knows their genotype and to avoid discrimination. We aim to launch the book in June to mark World Sickle Cell Day and invite stakeholders to help fund this project.
In addition we are working to ensure hospitals have better access to blood using the Haima web and mobile service so that donors are constantly available. Nigeria has a young and largely healthy population and it is abysmal that health care providers are constantly short of blood. We hope to gain funding to embark on more marketing to register and inform more young people on the importance of voluntary, regular, non-renumerated blood donation.
Gratitude from Beneficiaries is my greatest reward
It has to be the gratitude of our beneficiaries who have become a community. A lot of Nigerians with conditions like SCD live in isolation and often do not tell even their closest famliy about their struggles because of fear of judgement or ridicule. When they reach out to us, they find comfort in speaking openly about their challenges and being able to assist them in any way I can is incredibly rewarding, In addition, I am receiving a Commonwealth Youth leader award from the Queen of England in June in recognition of my work and the accolade has been quite exciting.
Gosh there are so many! Working in the non-profit sector is very challenging in Nigeria because there are always a lot more people in need of help than you can render. Funding is our primary challenge, as like most NGO’s, we run on donations from individuals and organisations. These are usually inconsistent and make it difficult to plan. We always have more projects than funds so we have to prioritise quite aggressively which can be frustrating.
Secondly, ignorance and misinformation are rife in Nigeria regarding SCD as well as most other health conditions. Often times people with SCD and their families have tried all forms of herbal, spiritual and religious interventions to their ailments before coming to us for help and this diminishes the effectiveness of their treatments. Trying to re-educate the public including health care providers on SCD is a constant challenge.
Finally, most Nigerians do not know their genotype or blood group. In fact I would say that 85% of the population have no idea what it is or are unsure. There is no way that an NGO like ours can work to correct this without the Government making SCD a priority. Implementing a new born screening program so that all babies born in hospitals are tested for their genotype during the immunisation programs has to be made a priority by the Government and we will keep advocating for this. It is regrettable that even though Nigeria has the highest rate of SCD and sickle cell trait in the world, it is not a health care priority allowing SCD to keep contributing a huge percentage to under 5 mortality.
I am a woman of rubies
I would say it is my ability to turn challenges into opportunities, not just for myself but for those around me!
Everyone that knows me knows that I am a card carrying feminist! Men and women are not the same but both sexes can achieve anything they set their minds to with passion and diligence. Unfortunately we still live in a very patriarchal society where a lot of the rules are determined by men, while women are marginalised socially and financially. However there has never been a greater time to be a woman anywhere in the world as things are improving slowly but surely. I would encourage women to always help each other up and not tear each other down, as we have obligations to further each other if we are to get ahead. I am hopeful that the future will open up even greater opportunities for women.
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For more information on SCAF, our activities, how to volunteer and donate, please visit www.scaf.org.ng or follow us on our social media handles @scafnigeria
To register as a blood donor and save a life please visit www.haimahealth.org.ng