By Ebele Orakpo
With more than 40 million Nigerians as healthy carriers of sickle cell gene (Hb AS) and over 150,000 babies born each year in Nigeria with sickle cell anaemia (Hb SS), the country is believed to have the largest burden of the disorder in the world. Due to ignorance, lack of access to correct diagnosis/proper care and funding for research, most of these children will die in childhood.

Prof-Akinyanju

Burdened by this reality, founder/chairman of Sickle Cell Foundation, Nigeria (SCFN), a non-governmental organisation dedicated to the proper care and control of Sickle Cell Disease (SCD) in Nigeria, Professor Olu Akinyanju, speaks to Vanguard on the activities of the organisation and the ‘Give me Five’ support campaign . Excerpts:

WHY SCFN:  “I found it necessary to develop the National Sickle Cell Centre, NSCC, so that we can start to address the problems which are not being addressed due to lack of research and focus. What we know today to make patients live better have come from America because when they took slaves from here about 500 years ago, many of them would have been AS. As a result, America has a large population of sickle cell anaemia patients – may be 3,000 cases a year while Nigeria has 150,000 a year. In 1972, the African Americans forced their government to do something about it and they started with a Sickle Cell Anaemia Act passed by Congress. The government did not just pass it, they put in about $30 million, so with all that money, America has about 21 Sickle Cell Centres where they do research.

They were the ones to discover that when children are born, they are to be on penicillin twice daily to prevent pneumococcal infection. They discovered that you have to use brain scan (TCG) to know those who are prone to stroke so you can treat them. So in a way, if they had not taken slaves from Africa, and had their own sickle cell patients, they would not have done the research and we would not have known all these because research needs money.

Give me Five appeal

Funding is so important. We were lucky to have the Sickle Cell Nigeria building funded by Nigerians but now, we need help and that is why we are talking about the Give me Five appeal. Many people can afford to donateN5,000 a month to the SCFN to fund programmes including countrywide sickle cell research, capacity building of healthcare personnel and prevention/treatment of the complications of SCD. People who have property may will one to us instead of leaving no will or leaving everything to their children. These are some of the ways we could raise funds to enable us pay salaries and do research that we should do. Because we have no funding except by donations, we think that Give-a-five appeal will be sustainable since many people should be able to afford that.

Sustainable  funding

We have a girl with sickle cell anaemia who had a fracture due to some infection. She was billed N499,000 in Igbobi for surgery. Someone gave her a cheque for that. We are also looking for money to help those who need surgery and cannot afford it. We want the whole thing to be sustainable. The fact that we cannot pay salaries all at once is not good enough and many people want to help.

Two women invited us to their 80th birthday. They said we should talk to their guests and all the presents should go to the Sickle Cell Centre. One of them ended up giving us a cheque of N2 million about six years ago; the other one helped us raise about N600,000- N700,000 from her guests. I asked them why they did that and they said they had children with sickle cell; one died at 14 years and the other at over 20 years so now, that we have a foundation to address the issue, they want to be able to help. So there are good Nigerians.