Bukola Bolarinwa is a lawyer, sickle cell advocate, president of the Sickle Cell Aid Foundation and founder of Haima Help Initiative.
Haima Health Initiative mobilizes young people to donate blood, educates people on the importance of donating blood, the safeties and the processes of donating blood.
Bukola created HHI when a leukaemia patient needed platelets but no donor was found. Amazed, especially, at the number of people in Nigeria, Bukola decided to do something about it by educating people on the importance of blood donation.
In this interview with Sola Abe for woman.ng, Bukola opens up about her life as a sickle cell survivor and her work with Haima Health Initiative.
What gives her the motivation to keep pushing even when she’s not strong
I think that there are some days that you just don’t have the strength and there are some days that all I need is to get a call from someone that says, “oh, I’m in hospital, we need blood,” and the fire just starts because it’s one of those things that motivates me in a way that I can’t really explain.
If it was something else, I’ll probably say, “no, today is not that day,” but with this, there’s a drive that comes from a place that I haven’t fully understood. I don’t think I can explain it. I think this is my passion.
Why she thinks information on SCD is not widely spread unlike other disease
Sickle cell is a genetic disorder. If you’re not born with it, there’s no chance of you ever getting it in your life. Other diseases like cancer, malaria and HIV, you might not be born with it, but later on in life, you can get it. No matter who you are you can get these other diseases, they don’t discriminate. With SCD as something you can’t catch later on, if it doesn’t affect you directly or your family members, often times, people don’t care.
Money is also a big factor in diseases that get attention, so, diseases like cancer, HIV, get billions from International funders. Because of this, they tend to set the agenda for our health care priorities in Nigeria. Not to discredit any of those diseases, they are extremely important, but so is Sickle Cell. SCD is a majority black / African disease. Now, if Europeans or Americans had the level of sickle cell trait that we do in Nigeria, at almost 40 percent of the population, I assure you that it would be a priority.
So, it’s very sad for me to think that Africans/ black people don’t put ourselves first, we don’t think about the diseases that affects us the most and how we can create solutions to help people living with that disease. We allow others set the agenda for us.
What SC means
SC is a genetic disorder that people are born with when they inherit two faulty genes from each of their parents and what that does is that it means that their red blood cells are not round shaped the way red blood cells are meant to be and they are sickled.
What that does is that the blood flow is interrupted in all the vessels and it causes an array of complications, the most common being the sickle cell crisis, which is when the blood vessels are blocked usually within veins, and it causes excruciating pain. It can also cause organ damage and a host of other complications.
Why some couples who know they are of the same genetic status still go ahead to marry
It’s because love is a very powerful emotion. For example, a colleague of ours is SS and is married to someone that’s AS and it’s not because she didn’t know she’s SS. She’s born with it, she lives with it and is a sickle cell advocate but then she found love in this person and her husband nurtures her, takes care of her, he takes her to the hospital, and takes care of her child.
Is she now going to say that because she’s looking for someone who is AA who might not love her or treat her the way she should be treated, she should forfeit that person?
It’s something we come across very often and we shouldn’t forget that it’s only in Nigeria that we think that the primary purpose of getting married is to have children. The primary purpose marriage is companionship, to have somebody there with you till old age. That person might be AS and not have all the desirable features that you want.
It’s difficult to say it’s because they don’t have the information, they might have the information but love sometimes is an overwhelming emotion and it makes you make decisions that might not seem rational.
The options people in such scenario have
It is possible to test the genes of a baby in the womb through a process called Chronic Villus Sampling (CVS). The test involves placing a needle in to the womb through the woman’s abdomen (tummy) and obtaining a small sample of the fluid in which the baby floats (the amniotic fluid) between 16-18 weeks.
There is also Preimplantation Genetic Diagnosis (PGD) which allows the parents to select the genotype of the embryo before implantation into the mother using IVF.
There is also the option of adoption. I always say that my job is to give people advice. I don’t tell people what they should do. I leave them with all the information and ask them to make their decision based on what they feel is best.
If couples who are carriers should go ahead
It’s a tough question because I have sickle cell. I can’t then say that I wish my parents had known that they were going to have a child with sickle cell and shouldn’t have given birth to me. I can’t say that because if I’m telling people not to have children with sickle cell that means I’m saying I shouldn’t have been born. That doesn’t make sense.
I’m a human being, I have fully fledged ambitions and hopes and goals for my life but yes at the end of the day I still have a disease that is very serious, but I can’t say that I wish I hadn’t been born. Not everybody can say that but sickle cell comes in a variety of severity. Some people have sickle cell and they are bedridden with severe bone complication, countless surgeries, kidney problems etc but even they would not ask not to have been born.
In my experience, those that suffer depression are coming from a place of not having psychological and family support, which is extremely important when it comes to living with sickle cell. SCD can make one determined because it is a constant battle to survive.
So in response to your question, I would ask each couple to look at their circumstance and determine very carefully if it’s something they can embark on or not. I know a number of people that are raising children with sickle cell. It can be blissful when you are with the right partner but there are times when things are very tough. It’s a dicey situation but the most important thing I keep telling people is that they have the information handy.
On the popular belief that SC crisis will reduce or chances of survival become higher after the teenage years
It’s a mix of myth and fact actually. Firstly, statistically about 60/70 percent of children born with SC dies before the age of five. A lot of that is because they are not diagnosed early. In other countries, there’s something they call new born screening, which means all children, as soon as they are born, are tested to see if they have sickle cell. Sickle cell is one of those things that once you know that you have it, and you start the precautions and medications early, the chances of survival are multiplied by a hundred.
But a lot of people especially those that have their children at home in the villages don’t have the opportunities to test their children. They realise the child is always sick but they can’t pinpoint what is wrong and that’s what leads to the high infant mortality with sickle cell.
So when they say people with sickle cell don’t live until they are 18, it’s based on fact. Generally in Africa, infant mortality is high but it is higher with people living with sickle cell. A normal child can recover faster from malaria than one with sickle cell, so, all these things contribute to the high mortality rate of children living with sickle cell.
But then also, once a child is getting into their teens, they learn all the things that they shouldn’t do. For example, as a child, I remember this sack race at our inter-house sports, my mum warned me not to join them but as a child, you always want to do what your peers are doing. So I did the sack race and I fell ill that day. But as an adult now, I know my limitations and myself. Nothing obliges to do something that I don’t feel capable of doing.
I can read my body, I already know the signs to look out for and that is what happens to a lot of people living with sickle cell which is why when they get older, they are able to avoid crisis because they know themselves. You’ll always see me with a bottle of water because I have to stay hydrated.
When I was young, my parents would have to force me to drink water. I don’t play with my medications; I don’t take the risks that I used to when I was younger. I think that’s a huge part of the reason why as you get older, your crisis reduces.
And then the key windows for issues, which is like all your immunisations. Once you get into your 30s and you’ve taken all your immunisations, the chances of all the main triggers are reduced. However, getting older also comes with other complications that you might not get when you’re a child for example hip problems.
Popular beliefs about sickle cell that are not true and you want to displace
I think the first one is that people who have sickle cell will die early. That is not true because of medical breakthroughs, increased information, better hospital care, drugs like hydroxurea, and blood transfusions have really helped the lives of people living with sickle cell.
I think a lot of people now know that sickle cell is not contagious but then treating people with sickle cell with a sort of fragility or looking at them like they can’t do anything is not helpful. Nobody wants to be treated like someone that’s a little bit less than somebody else.
But all these come down to our educational system and the way we are taught about sickle cell in school. If you are a carrier and you get married to someone that is a carrier, there’s a one in four chance in every pregnancy that you’ll have a child with sickle cell and not that if you have four children, only one will have SS.
We’ve seen a couple, both AS, that had seven children with sickle cell. So, we really need to improve sickle cell education.
Tell us more about the recent potential breakthrough for sickle cell
The cure for sickle cell now is bone marrow transplant (BMT). It is when they take a bone marrow of a matching donor, which is usually a sibling, and transplants it to someone with SCD so that the person starts producing normal red blood cells and not sickled red blood cells. This treatment has been successful in about 85 out of 100 children who had transplants.
BMT has a lot of limitations.
- Usually it’s done in children, usually less than 18 but it is increasingly being done in older people.
- You have to have a HLA typed matching sibling and that also is limiting
- Funding is also a major limiting factor. They usually cost around $100,000 in the US and about $30,000 in India. So, the costs rule out almost 90% of people.
The new breakthrough is called gene editing, which means that you don’t need a sibling. What they do is that they take out your marrow and they edit the genes and put it back in you so your bone marrow starts producing normal cells and it was successfully done in a French teenager last year.
With BMT, you have to go through chemotherapy to kill off all your white blood cells, although they are trying to improve the way chemotherapy works. There’s also a chance of graft host diseases, which means that the patient’s body can reject the bone marrow. However, when it does work, it works perfectly. The person goes on to live a normal fulfilled life but the steps to get there is really difficult.
But the potential breakthrough is expensive
It hasn’t even been costed yet because it’s still in the research phase. But even when it will be available, it will probably be around the same price as the BMT and available to those in the developed world. It’s still a long way. We are talking about 15 to 20 years away but it’s exciting that things are being done about it.
How voluntary Nigerians are in donating blood
I think blood donation is about education, which is what I aim to do with Haima Health. To teach the importance of donating blood and to remove the stigma associated with it. So, the first thing is whenever I meet people that are small and they tell me they don’t have blood, I tell them it’s not just about their size and weight. There are other factors that are considered before you can donate.
They test your blood sugar, blood pressure and then they’ll check your HB level and tell you if you’re eligible to donate.
And then the question of “why should I give blood?” the largest way people get blood is in family replacement, so, if you’re in a hospital, your sister will come and donate blood and that’s how we also started. We call on our network of donors to go and donate blood to patients. You don’t have to wait till you or your relative is sick before you donate blood.
It’s a civic responsibility and you are saving people’s lives as you don’t know the day you’ll be in a situation you’re going to need blood. You shouldn’t feel that you need an incentive before giving blood. Not everything is transactional. In Nigeria, everything is about, ‘I’m giving you something, what will I get back?’ and that is a terrible attitude to have.
In general, Nigerians are very generous, I must say. We had a blood drive one Saturday at Lagos Island, somebody came from Ajah, another person came from Magodo, a guy was going to Ibadan, he came to donate blood and then continued his journey.
We see so many fascinating people. Part of our service is that when people are in hospital and they need blood, they call us and there was a particular instance, we called a guy, he was in Cotonou, and he said he was driving back into Nigeria. When he got here, he drove to Ikorodu and donated blood for a woman the same day he arrived. So, in every 10 people that will say no, you’ll find one person that will not only say yes, but will go out of their way to help out and it always makes it worth it.
The process of collecting blood, ensuring its safe and making it available to patients
We don’t actually collect the blood, we help get donors for Lagos State Blood Transfusion Service and National Blood Transfusion Service because they have the registered blood banks and they disburse the blood to all the government hospitals within the state. We try not to really collect blood for private blood banks because they have the incentive method which we don’t like to do.
We also don’t like to give people anything for donating blood. We’ll give you small chops and drinks, little souvenirs’ but at no point are we going to give you money for donating blood because it’s like a double-edged sword. Once you start it, at which point do you stop? So, we want to remove the transactional aspect in blood donations.
We started Haima when people living with SCD need blood, they would call SCAF and we decided to just expand this and make this into a whole new service on its own.
We have an arrangement with the Lagos state or national blood transfusion service to help arrange blood when someone with SCD needs it.
All donated blood is screened for about N5, 500. Most hospitals charge you more. If you go to a government hospital and they can charge you almost N15, 000 for a pint of blood. Please ask them why they are charging that much.
The way it is now in Nigeria, if someone is rushed to the hospital and they need blood, they hold your relatives and say, we’ll give you blood but you have to donate to replace it but it shouldn’t be like that. People shouldn’t constantly be held in ransom to donate, the blood bank should be full and people should be donating voluntarily.
Challenges she faces in carrying out her work
Funding is our primary; when you run an NGO, you turn into a beggar. You have to beg this person, please help me with my graphics, and please help me with my website. You constantly have to get favours. But God has been so good; I’ve had amazing friends that have given so much to the cause. When we have blood drives, people often donate the food and drinks for free, so Nigerians are very generous. But it’s very challenging to work with very little funds.
Switching the mindset of people is also a major challenge because a lot of these things are meant to have been taught from a young age. When you grow up watching Nollywood where blood is associated with rituals, it’s very hard trying to correct that perception because it is engrained.
In addition, a lot of Nigerians are always very skeptical. When I started working in NGOs I was so shocked to find a level of distrust people had with donating blood; they’ll say we want to sell their blood. There’s a general mistrust in Nigeria that everybody is just out to do something for themselves or for their own personal gain.
If she is scared of death
Everyone is gonna go one day, that’s for sure. We all are not going to live forever but yes, I’m not going to lie, it’s a big driving factor for me because I was reading this article about the importance of time, and how everybody feels like they have unlimited time, until maybe the doctor comes one day and say, “oh, I’m sorry, I have bad news, you only have six months to live,” and then you start trying to do all the things you had the opportunity to do in that six months. I try to live my life as if tomorrow is going to be the last day.
Sickle cell has taught me not to take time and good health for granted because it’s one thing to be alive and another to be healthy, to be able to go out and pursue your dreams. I think sickle cell has allowed me to be more aware of time. I lost three friends due to SCD in the space of two years back to back and it was devastating.
When we lost Nura, I was heartbroken, it’s going to be a year in June and Nura taught me so much about sickle cell. Nura was never ashamed of his status, if he meets you, he’ll say, “hi, my name is Nura and I have sickle cell.” He wanted to sing it and tell everybody. He was so passionate about it.
A huge problem with sickle cell is people that live with sickle cell don’t talk. There’s a stigma associated with it. There are a lot of people living with sickle cell but they are hiding, we know ex-governors and senators in Nigeria with sickle cell. When they want to help us, they give us private donation and ask us not to mention their names.
We know influential people that live with or have children with sickle cell and they come and tell me that what I’m doing is great. They support but at the same time ask for anonymity. They feel like if they come out, people will use it against them.
Nura was never like that, he was proud to have sickle cell. He really impacted my life in such a positive way, so when he went, he really pushed me to do more. I do think about it, my friends that I have lost, sickle cell people that I know that are struggling and don’t have the opportunities that I have, so I’ll try to be a voice to those that I feel can’t speak up for some reason.
Her advice for people living with sickle cell
I think the first advice to people living with sickle cell is to know yourself. Know your body and know your limitations. My mum used to say heaven helps those who help themselves. That is such a key part of living with sickle cell. It is only you that knows where it pinches.
When I was in England, I had this amazing doctor. He literally changed my life, Dr. Jackson was his name and he used to say, “The best expert on sickle cell is the person living with sickle cell. Don’t ever let any doctor or nurse or religious leader or parent try and tell you that this how you should be feeling or this is how you should be. You know your body and how you feel, don’t let anybody downplay your pain.”
He used to stress that and I think that’s a problem from medical practitioners’ in Nigeria. They don’t listen to patients. If a patient is telling you that this is my problem, listen to them and see how you can solve this person’s problem. Don’t try and dismiss them and say, “No, you’re exaggerating.” It’s a big problem for people living with sickle cell. They always say you are exaggerating your pain.
Nigerian doctors will tell you they can’t give you strong painkillers because it causes addiction and that you should just try and be strong. I always tell people with sickle cell, you are the expert on sickle cell, and not the doctor. Listen to your body, know your body, and understand how it works.
Also know your limitations. I’m guilty as well. My body tells me I’m tired, I need to rest but I’m like no, I want to do it and then when you break down, it’s like “oh, maybe I shouldn’t have done that extra thing.”
Part of knowing your limit is that if you need to stay hydrated; if you know you’re going to be in a place where there would be no opportunity for you to get water, or if the place is going to be too cold or too hot, don’t go. Avoid any of your triggers. If you know you’re going to be in a situation where you’re going to be too stressed, avoid it.
Also speak up. I never used to be this vocal. Up until a few years ago, and Nura was a huge part of that, I wouldn’t literally meet everybody and say, I have sickle cell, but overtime, I realised that it’s not a crime, I didn’t do anything wrong so why am I ashamed? It’s a part of who I am. If you look at a lot of other diseases as well, like cancer and HIV and how they’ve been able to make so many breakthroughs in terms of stigma, it’s because some people who have had their breast cut off show the picture and the only way to desensitize people from stigma is just show them.
I have this shirt that says, ‘I am the face of sickle cell’ and sometimes, I’ll just wear it and people will look at me and say “oh, you have sickle cell, wow, my daughter has sickle cell. Can I take your number?” Just to let people know that there’s nothing wrong with you. There’s nothing you should be ashamed of. You didn’t do anything wrong, you’re valuable, you’re important. The only limit you have is the limit that you place on yourself.
How the public can support people living with sickle cell
I think it’s just about treating people with sickle cell like you would treat any other person, bearing in mind, their limitations. I had a great boss. My boss is a kind of person that if I fall sick, even if it’s two weeks, he will not stress me, so when you feel better, come back to work and pick up from where you left off.
He’s someone that understands. When you’re working or living with people with sickle cell, there are limits to what they can do, so try and understand, but at the same time, it’s not because I have sickle cell, I’ll come late to work. It’s equity.
My friend, Fatima explained the difference between equality and equity. Equality is treating everybody the same but equity is giving people different chances to achieve the same thing.