Sickle Cell Advocate Bukola’s Changemaker Journey

Bukola Bolarinwa is a Nigerian lawyer, sickle cell advocate, president of the Sickle Cell Aid Foundation (SCAF), and founder of Haima Health Initiative. Haima Health Initiative (HHI) aims to “plug” the blood supply gap for patients in Nigeria.

Bukola’s passion for sickle cell stems from her personal experience living with the disease. Sickle cell disease is an inherited red blood cell disorder in which there are not enough healthy red blood cells to carry oxygen throughout your body. Symptoms of sickle cell disease include anemia, jaundice, and chronic pain.

Bukola grew up in Kaduna, a town in northwestern Nigeria. “When I was younger,” Bukola recalls, “I would fall ill quite a bit. My mom would tell me 'don’t get over-excited, because when you get over-excited, you will get sick.’ That usually meant I would fall ill, like playing in the rain or the things that my siblings could do, I might get sick from it. It was hard not being able to do the things I wanted to do as a kid.”

Adapting to her situation, she discovered joy in other ways. “I would rescue kittens and stray animals and bring them home,” she smiles. “I am just like my mom. She would always get mad at me, but shortly after, she would deeply care for the animal, too.”

According to the Sickle Cell Aid Foundation (SCAF), Nigeria has the largest population in the world of people living with sickle cell disorder with around 150,000 births annually. Those with the disease suffer a higher-than-average frequency of illness and premature death, especially in infancy. The condition can also cause heart attacks, kidney failure, and severe infections.

“When I was about 11 or 12, my parents sat me down to tell me why I was falling sick when I tried to do things,” Bukola reflects on the day she learned that she had sickle cell disease. However, Bukola remained positive as a young girl, “I think my challenges as a child made me resilient. I always had a passion for human rights growing up and our motto in my Primary school was ‘thoughts for others’. This stuck with me and influenced my personality today” (The Guardian).

Bukola’s passion for human rights manifested through her actions and aspirations. When she was young, she wanted to one day work for an international organization like the UN. “I would also volunteer with orphanages when I was young,” Bukola remembers, “And in my neighborhood, many families hired people who helped around the home. Many of these individuals and their families wanted to improve their reading and writing skills. So, I would collect storybooks for their kids.”

When Bukola was in her teens, she saw many families recommend herbal, spiritual, or religious remedies. Although her family prioritized medical care, she noticed that many other children were not able to afford or access quality treatment. This disparity left Bukola unsettled; however, she didn’t know what to do at the time.

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Ambitious and driven, Bukola went on to study in the UK, then attended law school. “When I moved back to Nigeria,” she recalls, “I knew I wanted to do something for sickle cell.”

Bukola’s path changed when she met and befriended Nkechi Azinge at the Nigerian Law School in Bwari. Nkechi’s three siblings all struggled with sickle cell disease, just like Bukola. In response to her family’s long journey battling the disease, Nkechi founded the Sickle Cell Aid Foundation (SCAF) to ensure a life of dignity for those living with the disease.

Bukola and Nkechi bonded over a shared journey - the emotional, physical, psychological, and financial burden the disease placed on themselves and their families was overwhelming. However, unlike many Nigerian children, both were fortunate to have supportive families and medical care to live full lives.

Eagerly, Bukola joined Nkechi’s organization to raise awareness about the disease. Bukola, while spending time volunteering in hospitals, noticed that many sickle cell patients required blood transfusions. Although the medical staff was able to perform the procedures, hospitals often lacked a consistent supply of blood to keep up with demand.

Bukola and her team began to call their friends, encouraging them to donate blood. Many people were not familiar with blood donation, and many Nigerians, Bukola shares, “still have a negative image of sickle cell disease and reported negative perceptions and attitudes" towards donating blood.

Frustrated by the chronic shortage of blood that plagues the health care sector in Nigeria, Bukola aspired to rethink Nigeria’s supply of blood. She saw a clear deficiency in the blood supply value chain in Nigeria, which is the largest country in Africa and the 7th largest country in the world. She thought to herself, "there are not enough actors working to close the gap."

So, in 2015, she founded her own organization, the Haima Health Initiative, which aims to plug the blood supply gap for patients in Nigeria. Today, it is the largest voluntary, online blood donor register in the country.

Bukola writes, “I am inspired by so many things and people. I am inspired firstly by my mother who has taught me patience and perseverance during adversity. I am inspired by Nkechi who is extremely focused and innovative at such a young age. But most of all, I am inspired by people living with SCD and other health conditions in Nigeria who face unimaginable obstacles trying to survive. Living in Nigeria is very stressful for able-bodied persons, but living with a disease, disability or physical challenge is a hundred times worse. Inspite of these, we are often the most positive, ambitious, and vibrant people you will come across!” (The Guardian).

This inspiration stems not just from a desire to give back, but a goal to shift mindsets. “The goal is to increase the number of voluntary blood donors and create a culture of donation devoid of superstition especially amongst young persons,” she shares. By changing the public’s attitude around giving blood, Bukola hopes to normalize donating blood as a part of being an active citizen.

And when the global pandemic hit Nigeria in 2020, Bukola quickly responded. Although the team was not able to carry out blood drives at their typical locations, such as university campuses, religious organizations, and public events, the team created social distance blood drives in public spaces to encourage donations. Bukola shares, “we will be providing transportation to donors from their homes and workplaces to blood banks in their local government for the rest of the year.” Even in times of crisis, Bukola and her team are providing lifesaving resources to mothers, new-borns, patients with cancer, and sickle cell disease.

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“I never thought I would run something in the way I am now,” Bukola exclaims. However, she did not start her organization without researching the field first. “Don’t think that your solution is unique. It is not about what you do, but about how you do it,” and that is what makes a solution unique.

Today, as a young changemaker, Bukola is thinking about how she can further address the systems behind blood supplies in countries like Nigeria. And, as an entrepreneur, she is “increasingly finding that problems are a lot more complex than you originally think they are," sharing that she is always thinking about the next idea to deepen her impact.

For young people looking to create change, Bukola suggests everyone does their research before launching something new. “Whatever problem you are trying to solve, work with them. Study other people’s models. See how you can do it a little bit better.”