Dr. Annette Akinsete is the National Director/Chief Executive Officer (CEO), Sickle Cell Foundation Nigeria (SCFN). She spoke with journalists on the foundation’s plans to mark this year’s World Sickle Cell Day holding on June 19, assuring Nigerians that Sickle Cell Disorder (SCD) is not a death sentence as it could be treated in the country. PAUL ADUNWOKE was there. Excerpts:
What is the prevalence of sickle cell disorder in Nigeria?
Over 150,000 Nigerian babies are born with sickle cell disorder every year out of whom, 100,000 die before their fifth birthday. To reduce this menace, the foundation has launched the integrated health initiative from Kano State to Epe, Lagos State where the foundation is reaching underserved populations, screening newborn babies for sickle cell, equipping clinics and empowering the forgotten.
The foundation, in partnership with Lagos University Teaching Hospital (LUTH), has established a state-of-the-art bone marrow transplant (BMT) centre to ensure that every Nigerian living with sickle cell disorder is well treated. The foundation has successfully treated 52 persons under the bone marrow transplant programme. We must not rest until every child with SCD in Nigeria has access to early diagnosis, access to prompt, effective and compressive treatment, access to cure and lives with that confidence that he or she will live in a society where there will be no stigma and discrimination.
We have trained healthcare workers. We carried out thousands of free tests, and provided free medicines and life-saving health education. SCFN is poised to reverse the tragedy of sickle cell disease. But we do not do all of these alone. SCFN believes in collaborations and partnerships across the country. And we shall continue to reach out to individuals and organisations, both public and private, to bring sickle cell to its knees.
The Youth Development Programme (YDP) of the foundation is a public health initiative raising awareness about sickle cell disorder among corps members. It provides free screening and offers specialised training for selected advocates. It is integrating sickle cell advocacy into the National Youths Service Corps (NYSC) community development services activities.
The YDP presents a strategic vehicle for implementation, spread across every state in Nigeria and the 774 local government areas across the country. So far, over 19,000 corps members have been sensitised across six South West states and over 700 volunteers registered to be deployed to their respective communities.
Another programme of the foundation is sensitisation of secondary and tertiary school students across the country. This project seeks to educate young people about the causes, consequences, and prevention of SCD while fostering empathy, advocacy skills, and leadership.
The trained students are equipped for a step down phase of the project. The project has sensitised over 9,000 students across two states and provided institutional medical support for these schools.
The foundation was established 30 years ago. How many SCD patients has it successfully treated over these years?
The foundation has developed a robust infrastructure that is second to none in Africa. It has had 16 dedicated sickle cell clinics across various states in Nigeria, helping to alleviate the burden of SCD management.
The clinics’ capacity efficiently covers stroke prevention, prenatal diagnosis, reference hemoglobin laboratory services, automated exchange blood transfusion, among others.
On blood transfusion, it has treated 405 patients; prenatal diagnosis services, 3,104 patients; reference hemoglobin laboratory chemistry investigations, 248,470 patients; free drug administration, 70,600 patients; children enrolled in stroke prevention programmes, 32,04 patients; free genetic tests, 4,317 patients; free leg ulcer treatments programme, 60,476 patients; hip replacement surgeries 26 patients; genetic counsellors trained 100. Through our sickle cell clinics, we have trained five specialists through our molecular training technique and chorionic villus sample.
The establishment of a state-of-the-art bone marrow transplant centre by SCFN is a transformative step in the fight against sickle cell disorder. By reducing the reliance on medical tourism and making curative treatment accessible locally, SCFN is significantly improving the quality of life for individuals with SCD and setting a precedent for advanced medical care in Nigeria. The advocacy efforts of the foundation have culminated in the development and publishing of our sickle cell disorder handbook for doctors and nurses.
Your theme for World Sickle Cell Day is ‘Access to New Therapies: Hope or Hype? Exploring Bone Marrow Transplants, Gene Therapies and Accessibility in Low Resource Settings’. What informed this theme and what message is it passing across?
It is passing a message of hope for SCD patients and Nigerians at large. At SCFN, we assure Nigerians that there is hope for them when it comes to sickle cell disease. The treatment is available in Nigeria; you do not need to travel to India, America, Europe for sickle cell disorder treatment. Some people still ask if it is true that we can treat sickle cell in Nigeria and we tell them, “yes, it is true and not hype.” You hardly see the services we give here in SCFN in any other part of Nigeria and the world.
When we started the bone marrow transplant programme in 2011, people started bringing their children for treatment. All our staff members are dedicated and you can call on them at any time and they will respond. By the grace of God, we have achieved a lot through our dogged efforts and we will continue until sickle cell is no more in Nigeria.
As we all know, Nigeria has the highest career of sickle cell in the world. We will not be deterred from improving the treatment positively. I am happy that the stigmatisation is reducing through genetic counselling and other sickle cell programmes. We also train health workers in genetic counselling for Australia, Newland, Canada, and some parts of Europe. Many of them have sickle cell cases and they do not know what to do. They contacted us and we organise training and workshops for them.
Do you think that your genetic counselling is effective as we still have a huge number of Nigerians living with sickle cell?
Apart from genetic counselling, we value early diagnosis especially for children, because it helps a lot in treatment of sickle cell disease. We also want to partner with the government, especially the Ministry of Education, to enable them to include sickle cell in the school curriculum so that children can learn about sickle cell in schools and at the same time know their genotype.
We also partner with churches; telling them that before couples wed in the church, it is very important that they go for genetic screening in a recognised place. Some people go to church and present reports that their genotype is AA while the report is fake. Therefore, we encourage people to take genotype tests very seriously because it will help in reducing sickle cell cases.
Statistics have shown that eight out of 10 intending couples will go their separate ways after discovering they will get a sickle cell child when they get married while two out of 10 will go ahead and get married. It is their choice and the law is not against them. The couple might decide to go for Ivetrofertilisation (IVF) to avoid having sickle cell children. They might also go for adoption as a means of having their children.
The foundation has been using the established figure of 150,000 as the number of persons living with SCD in Nigeria for some years now. Do you think that is the current figure of Nigerians living with sickle cell?
We have developed sickle cell communities based centres to get access to communities across Nigeria. We also have a sickle cell registry in Nigeria and other countries in Africa that will enable us to know the current number of persons living with sickle cell disease. SCFN is focused in Nigeria and we are concerned about data. But we will continue to use 150,000 as our estimated figure until we finish the processes and come up with a new figure, which we will communicate to members of the public.
What are the challenges facing the foundation?
The major challenge we have is lack of funding; we need governments and individuals who can volunteer to fund sickle cell treatment to partner with us. This June, we are going to have a series of programmes for World Sickle Cell Day to educate community members about sickle cell and we are not going to do that alone. We need other non-governmental organisations to support us in creating awareness about sickle cell.
We are going to have blood donation programmes. Sometimes we see touts coming out to donate blood and we are not going to accept that. We need well-meaning Nigerians to come out and donate blood to save the lives of people living with sickle cell. This blood donation programme is coming up on June 28, 2025. We want to mobilise Nigerians to come out and donate blood.
On the part of the government, we want them to support us by making good policies that will help us to thrive. We also expect private organisations to come and finance our programmes. If all these people can support us, I believe we will be able to achieve our goals.
Another challenge we have is that many of the cured sickle cell patients do not like to come out and share their success stories. They always need confidentiality and this has caused us setbacks because many people will believe when the patients come out to narrate their ordeals.
We have recorded miracles in SCFN, especially in the bone marrow transplant programme. We have cured many patients including those who have gone back to school, rejoicing. But they cannot come out to the camera to talk about their days of suffering. We believe that time will come when we can bring out patients in the ward to talk to journalists.
Currently, how many sickle cell patients are in wards?
We have only two patients in the wards and they are responding to treatment positively. We find it difficult to see patients who will come out to talk about their experiences during the bone marrow transplant. But we still believe that time will come when patients will be ready to talk and we will let you know.
