Words By – Josephine Agbonkhese

Consultant public health physician, teacher and broadcaster, Dr Annette Akinsete is National Director/CEO of the Sickle Cell Foundation Nigeria, an organisation that has since 1994 risen gallantly to the burden of the sickle cell disorder in Nigeria one estimated to be the largest in the world.

Akinsete, whose interest in the disorder stemmed from her days at the Federal Ministry of Health where she was Director of Public Health, has represented the Federal Government of Nigeria at several fora world over.

At the global level, the award-winning health specialist has contributed to World Health Organisation, WHO, publications on Non Communicable Diseases, NCDs, served as WHO Fellow in Geneva, and also as UN Cares Facilitator at the United Nations Headquarters in New York.

In this interview with Allure, Akinsete casts a light on sickle cell disorder, her work at the Sickle Cell Foundation Nigeria, childhood, style, and much more.

Why sickle cell of all other aspects of public health?
Sickle cell is crying for help and support. At the Federal Ministry of Health, I was Director for HIV/AIDS for a number of years and I know that HIV/AIDS was very well resourced in terms of funding and human resources. I couldn’t say the same for non-communicable diseases; I was also Director for non-communicable diseases which encompassed hypertension, diabetes and sickle cell. So, when I retired, I knew I had to pitch my tent where I was needed more. Then, like I said, sickle cell was crying for help.

How true is the assertion that Nigeria has the highest rate of sickle cell disorder in the world?
Yes, it is true. This is a condition that tends to affect mostly the black race and we live in the tropics. If you look at where sickle cell appears most in the world, it is the tropics where you have malaria. So, wherever you tend to have malaria, you have sickle cell. That is why Nigeria, being so populous, will definitely rank high more than other countries. Black people in the tropics are actually the ones affected.
Blacks who live in the temperate parts of Africa do not have sickle cell. In terms of carriers, one out of every four Nigerian has a sickle cell trait and these are the persons that become at risk of having children with sickle cell when they marry one another.

Is eradicating sickle cell possible?
I don’t like to use the term eradication for sickle cell because the gene is already in the population.
We can control it, manage it, ensure they live normal, productive lives and contribute meaningfully to their communities. That is exactly what we try to do under the Sickle Cell Foundation Nigeria. Beside this, now we have a cure for sickle cell in the form of stem cell transplantation.

Who is susceptible to the disease?
You are at risk if your parents have the gene; if they are designated AS carriers.
Sickle cell is a condition of the blood that affects the red blood cells. It causes anaemia and a lot of pains but the problem really lies in the red blood cells which are supposed to carry oxygen. The substance in the red blood cell that helps us extract this oxygen is called haemoglobin. Now, the problem with sickle cell lies in haemoglobin; the haemoglobin in persons with sickle cell is designated haemoglobin S and that haemoglobin is not very efficient in carrying oxygen around the body unlike the normal haemoglobin A.

The Federal Government recently announced that drugs have been developed to fight sickle cell in the country; is the intervention working already?
A number of newer drugs and treatment protocols are undergoing trials across the world for the treatment of sickle cells. I am not sure which particular one was recently announced by the Federal Government. However, we are on top of these trials because the work we do are largely collaborations and research.
Unlike in the past where we prevented our patients from being used for clinical trials, these days, we try to expose them to it. So, currently, a few of them are in some clinical trials in America and they’re doing well. Be that as it may, we ensure all their rights are preserved.
Already, the Federal Government has put out policies and guidelines for treatment of sickle cell and we are grateful. They however, also need to fund sickle cell because one of the greatest challenges we have is that insurance companies are not signing on patients with sickle cell for health insurance. So, they always have to fund their treatments from their pockets.

People with sickle cell are said to suffer a lot in the course of their lives. What are the various challenges they face?
The first aspect is physical challenges. They suffer severe pain which is the commonest symptom that takes them to the doctor. There is shortage of blood, as said earlier, which causes weakness and difficulty in coping with everyday life. They also suffer complications such as strokes and ulcers. Many also have suicidal tendencies due to frustration. There is also the problem of prolonged, unwanted erection of the penis for men which can persist for days. This can be really painful.

Why do you think couples still go ahead with marriage when they know they are not genetically-compatible?
The truth is, most couples do not do their tests. They therefore do not even know whether they are carriers or not. Even when they do know, some still go ahead forcefully. Some even go as far as presenting fictitious genotype results.
Preventing sickle cell is knowing your genotype coupled with genetic counselling. Genetic counselling is offered at our centre everyday on a walk-in basis.

How can religious institutions, the traditional society and even the court which unite people in marriage help put a stop to non-genetically compatible marriages?
It is not in their place; what they can only do is educate. This will otherwise mean trampling upon peoples rights, and I have seen lawyers and all kinds of groups push back against this.
In the legislature in Nigeria, both in some states and the National Assembly, bills have come forward already to say this does not align with fundamental human rights.
You cannot dictate who one marries; you can only do education, health promotion, testing and genetic counselling. When you counsel properly, people are able to make up their own minds.

What are your various interventions as an organisation?
The Sickle Cell Foundation Nigeria, SCFN, was established in 1994 to fill that gap that was evident in the fight against sickle cell in Nigeria; and we do everything in the entire spectrum for sickle cell disorder from prevention to treatment, care, support and now, even cure in the form of stem cell transplantation as stated earlier. We have it here now in our National Sickle Cell Centre in collaboration with the Lagos University Teaching Hospital. We also have as our technical support partners, the Vanderbilt University Medical Centre, Nashville, Tennessee.
We need a lot more centres carrying out stem cell transplantation in Nigeria instead of our patients running abroad to access this; which is quite expensive.
We also have a stroke prevention programme/unit that prevents stroke from occurring in children between the ages of two and 16; as this usually happens in about 10 percent of children with sickle cell. We also have a DNA laboratory as well where we do pre-natal diagnosis which is a form of early diagnosis.
Also, we offer leg ulcer treatments. We have dedicated sickle cell clinics and we have a superb model embedded within state government services across different states in the country. Among other interventions, we recently established a bone marrow transplant centre.

How has it been trying to fight sickle cell in Nigeria generally for you?
It is fulfilling to be able to make a difference. Like I said, a gap was evident and that was why the SCFN was established in the first place. I think we are doing a great job in terms of awareness. Things have really improved compared to the time when people hid their children or considered them witches. More sickle cell patients are living till old age; in fact, we had a woman who died recently at 94.

Let us talk about you; what was your ambition as a child?
My ambition as a child was always to look after people. I could have been a teacher. I went to a Catholic Secondary School, so, at a point, I toyed with the idea of being a Reverend Sister. I could however tell there was that burning desire to look after people. My parents however encouraged me to study medicine.

What city did you grow up in and what was growing up like?
I did not grow up in one particular city. I was born in Ibadan. My dad was in the civil service in the old Western Region and we were later posted to Benin. After the war broke, we moved to our hometown in Asaba. It was horrific but I am thankful that my father, mother and all eight siblings survived the war and returned to Benin where we continued life. So, I attended Saint Maria Goretti Girls Grammar School in Benin City where I made a lot of good friends and was raised by very strict Reverend Sisters; in fact, I owe to those times a lot of the things I do today.

Who inspired your life choices the most?
My dad. I was daddys baby among all eight children. I could do no wrong, in fact. He called me Queen of Tonga. Anyway, he influenced me quite a bit. My dad was an excellent, tall, fair and handsome gentleman. He passed away two decades ago; I wish he lived longer. I miss him.

Describe your style in three words
Classy and simple. Just those two.

What do you love most about fashion?
I am not even sure I follow fashion trends; I am big on simplicity and class. I love timeless pieces. You will not catch me wearing a mini dress or dresses with plunged necklines. For me, that is not classy. So, as you can imagine for a girl who went to school with Reverend Sisters, to a large extent, I wear dresses that are decent. I also like toned down colours. My style is above all appropriate at all times.

Who is your style icon?
I do not have any.

What do you love doing when not busy working?

Reading. Then I take walks because exercising is very important. I watch movies as well. Reading however remains my favourite pastime.

What beauty routine do you swear by?

Drinking of plenty water because beauty is from within.

Where in the world would you spend a five -day getaway?

Ibadan in Oyo State. That is my birthplace and it still remains where I find so peaceful. This comes as a surprise, I guess.

…and what major project are you working on now right now?
The big project before us at this time is our stem cell transplantation programme. Right now, I have sent a number of nurses for training abroad and as soon as they return, we will dive straight into transplantation for the first couple of patients.