Bone marrow transplants can help people with life-threatening blood diseases. However, a critical requirement for the success of this treatment is the availability of a Human Leukocyte Antigen (HLA) donor who matches a given patient. Because of this, a common practice around the world is the establishment of institutions called bone marrow registries. The registries exist as places where willing donors can get screened and, if found fit, are able to donate HLA to those who need it.
According to HealthCareTrends, over 150,000 children are born with Sickle Cell Disease (SCD in Nigeria each year, and about 40 million people suffer in total, making Nigeria the country with the largest number of SCD patients globally. Even with these high numbers, the country has only one bone marrow registry. It’s a non-profit located in Enugu that isn’t as effective as it should be due to a lack of funding and awareness. The registry has existed for eight years and contains less than 1000 people.
Sickle Cell Disease (SCD) is one of the blood diseases that a bone marrow transplant can treat. So we’ve interviewed two SCD patients who live in Nigeria about their experiences managing the disease, how it affects their lives, and why they think the bone marrow registry is essential.
Ngozi, 34
I’ve lived with it for 34 years, and you can’t predict what your next day will be. You could be very active one day and be totally down the next. It’s not anyone’s fault. Our parents didn’t know better because there wasn’t enough advocacy. But now that there is advocacy, I hope that the disease ends with our generation.
Growing up, and because I required many drugs and hospital visits, it seemed like I was the only one of my siblings spending my family’s money. There’s also the stigma that comes with growing up with SCD. People treat you differently when they find out you have it. As a child, people wouldn’t want to play with me or be my friend or even touch me because they were afraid I could drop dead at any moment. It also affected my schooling. In my university days, I wrote most of my exams in the hospital, which made many people assume that I was using it as an excuse to cheat.
Whenever I’m not at home or church, I’m at the hospital because of a crisis. In many Nigerian hospitals, nobody cares about SCD patients. Even the government isn’t making things better. We used to have an NHIS that set our treatments and drugs cost N15k. It’s now N45k. And even with that, you’re not assured of quality service. There are some SCD platforms where patients encourage and help each other with money.
I’ve always known that a bone marrow transplant can help SCD patients, but I also heard it has a 50/50 chance of working. I also heard that it doesn’t change the genotype but gives you a crisis-free life, which sounds like an excellent deal because the pains of a crisis are worse than labour pains.
Henry, 28
Living with SCD in Nigeria is tough because SCD costs a lot of money. Like me, those who work and earn enough set aside cash from our income for unforeseen health issues that will undoubtedly arise from time to time. But the warriors, as we call ourselves, who don’t earn enough money are often at the mercy of loved ones and family.
SCD affects a warrior’s life in different ways. When a warrior suffers a crisis, their family members and loved ones take them to the hospital and stay with them for the hospital visit, which might last up to a week. Even though it’s no one’s fault and no one can predict it, having their lives upended like this every few weeks can strain the relationship between a warrior and their family. SCD even affects employment. Going to the hospital often means more time out of work, and there is only so much time off one can take before a boss lets you go. Let’s not even talk about the effects on relationships.
Most Nigerian hospitals don’t have haematology doctors. And the downside of a warrior going to just any hospital is that the doctors available probably won’t be trained to handle SCD patients. But in the national hospital where I go, a haematology doctor is usually called to treat SCD patients. The only problem is that the wait time might be extended because of the many patients waiting.
I don’t know much about the bone marrow registry. I know there’s one in Benin, but I don’t know if people register for it. However, it would be highly encouraging for people to assist us warriors and donate stem cells to the registry. A high-performance liquid chromatography HPLC test determines eligibility to donate. More warriors would be willing to undergo surgery if the bone marrow registries have all they need in terms of donations.
One thing that both sickle cell warriors hope for is that more people learn about the bone marrow registry. With more awareness comes more funds (from the government or in form of contributions from the general public) and more stem cell donations from viable donors. If these things are in place, more warriors would be willing to undergo surgery. Click here to visit the Nigerian bone marrow website and learn more about the process.
