World Health Day focus – Nkechikwu Azinge
Nkechikwu Azinge set up the Sickle Cell Aid Foundation (SCAF) in Nigeria in 2010, to help people with the hereditary blood disorder, Sickle Cell Anaemia. The organisation encourages people to get tested to know their haemoglobin genotype, and has set up Sickle Cell Clubs in schools to inform and educate young people about the condition.
Here, on World Health Day, Nkechikwu talks about her work:
“When I was younger I always heard about deaths attributed to Sickle Cell Anaemia (SCA), however it wasn’t until it struck close that I came to understand its implications. Watching family members and close friends undergo both physical and mental hardship due to the complications associated with this disorder spurred my interest to start the Sickle Cell Aid Foundation (SCAF), with the aim of reaching and assisting the people from disadvantaged backgrounds.
During my research I discovered that over 150,000 children are born with SCA each year in Nigeria and 100,000 die before their fifth birthday. These may seem like just numbers, until you realise that on average 273 children die each day from complications attributed to SCA.
It was however difficult for me to comprehend that there was not much work done through awareness campaigns to ensure that people from disadvantaged backgrounds have the necessary information to reduce the incidences of SCA. Most unfortunate was the fact that a lot of patients did not have access to quality healthcare, which could lead to cases of infant mortality.
These findings shaped SCAF’s aims, which are: To raise awareness of Sickle Cell Anaemia in Nigeria and to ensure that financially disadvantaged people living with the disorder have access to quality healthcare.
Since it began, SCAF has embarked on various projects, including the Know Your Genotype Campaign, The Sickle Cell Club Scheme, The Warm Clothes Drive and The Blood Drive. Periodically, we run the Show Your Genotype campaign, a social media movement and SCAFlympics, a sporting activity where we demonstrate the need for fitness in SCA patients and carers.
These projects ensured that more than 4,000 people in Abuja got tested to know their hemoglobin genotype, thus empowering them to make informed decisions as regards to their life partners and children. SCAF has also established sickle cell clubs in more than 20 schools across the city, reaching over 5,000 children with a curriculum I prepared to educate the younger generation about sickle cell and its complications.
We have worked to ensure that our patients have access to quality healthcare by getting them to hospital when they are in crisis, arranging follow ups with doctors and paying hospital bills when necessary. We also make sure that they have access to blood when they are in need of exchange transfusions and link patients with specialist doctors on the SCAF team.
My goals for SCAF in the future include ensuring that health insurance policies are in place for people with SCA and that policies are in place to prevent discrimination against those with the disorder. I also want to build Sickle Cell Centres at strategic locations in Nigeria to enable access to healthcare.
The Queen’s Young Leaders Programme will enrich me with requisite knowledge and skills to drive SCAF forward and enable me meet like-minded persons working towards changing the world.
I believe that the award will also put SCD in the spotlight so that researchers will appreciate the health challenges faced by people with the disorder and work expediently in their search for a cure.”