“In the middle of the night, when Andrea Young, 17, started screaming at the top of her voice, “Mom, I want to go home”. Her mother thought she is sleep-talking. Comforting her she said, “Hey Andy, we are already home”. Andrea opened her eyes, tears sprang up to the surface, vision blurred, “No mom, heaven’s my home, I can’t bear this pain anymore!”. Her parents then realized, it was the excruciating pain talking. Andrea had Sickle Cell Anemia, since age 4, periodic episodes of pain, fatigue, frequent hospitalization had taken a toll on her health. Quite often, the Sickle cells would get stuck, blocking blood flow to specific organs of her body, causing pain and infections. She had also suffered a stroke in the past.”
This is just one case…
Do you know, globally, it is estimated that, Sickle Cell Disease (SCD) occurs in approximately 300,000 births annually? And, SCD is most prevalent in malaria endemic parts of the world, primarily Africa, Middle East, and South Asia?
Tell us about your humble beginnings, your journey from Nigeria to UK…
I grew up in a close-knit family of 4 (exclusive of my parents). Spent my formative years in Abuja where I became aware of Sickle cell disorder and its potential impact on the lives of people. This awareness came primarily from findings that my twin sister was born with this disorder. We moved to England shortly after college, specifically for our undergraduate studies.
What is Sickle Cell Disease? How prevalent is it in Africa or Sub-Saharan Africa and why?
The term sickle cell disease (SCD) describes a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in their red blood cells. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. “Inherited” means that the disease is passed by genes from parents to their children.
SCD is not contagious. A person cannot catch it, like a cold or infection, from someone else. People who have SCD inherit two abnormal hemoglobin genes, one from each parent. In all forms of SCD, at least one of the two abnormal genes cause a person’s body to make hemoglobin S. When a person has two hemoglobin S genes, Hemoglobin SS, the disease is called sickle cell anemia. This is the most common and often most severe kind of SCD. SCD is quite prevalent in Africa affecting almost 3% of births in some countries. It affects geographic regions most prone to malaria and it is also found in Middle Eastern, Indian and Mediterranean regions.
Tell us about your organization Sickle Cell Aid Foundation (SCAF) and its contribution towards awareness and healthcare?
SCAF is a youth led non-profit organization established in 2010 to raise awareness about Sickle Cell Disorder (SCD) in Nigeria. Nigeria records the highest incidence of SCD globally with 150,000 children born with SCD annually, out of which 100, 000 dies before the age of 5. This indicates that there is still a lot amiss regarding awareness and delivery of medical care to patients who have SCD, especially the young and indigent. In recognition of the socio-economic burden of SCD in Nigeria, SCAF works to correct this undesirable position.
In 2012, SCAF commenced the Know Your Genotype Campaign (KYGC) through carrying out free genotype tests, counseling and awareness creation in the six area councils in the F.C.T. In addition, SCAF runs the Sickle Cell Club Scheme (SCCS) to set up sickle cell clubs in 20 secondary schools across the F.C.T where we also carried out free genotype tests. Students found to have SCD were placed on free drugs and their tuition fees paid. In addition, we work as a patient support group to aid sufferers with free drugs, hospital bills, and emotional support. We work with over 100 volunteers across 5 states to implement our projects.
So far, your organization SCAF has led several campaigns and run various programs, how do you measure the impact? Can you share with us success stories (if any)?
Our most impactful and award-winning project is the Know Your Genotype Campaign, which remains the largest ongoing genotype testing campaign in Nigeria till date. So far, we have carried out over 10,000 free genotype tests and counselling sessions. We have also supported over 200 people living with SCD with free drugs, support with medical bills, school fees and other financial means. Recently we have raised funds to pay for life saving surgeries for people living with SCD worth over N10 million. A big achievement for us was being able to crowd fund for a prosthetic leg for a lady with SCD who had an amputation due to osteomyelitis and pay for a hip replacement surgery for her. This dramatically improved her life and she can walk again. Our activities have reached over 100,000 persons across Nigeria through traditional and social media campaigns.
I read somewhere, that, deaths accounting to Sickle Cell Anemia are completely missing from global summaries making it the most neglected issue. Is it true? If so, then what is your take on it?
SCD remains a very low priority for Ministries of Health amongst African countries and there is very little data collected on births and deaths in the region making it hard to track. Although current data are inadequate to support definitive statements, they are consistent with an early-life mortality of 50%–90% among children born in Africa with SS disease. It is an unfortunate reality that healthcare in Africa is terrible for everyone in need of treatment, but for people with SCD an early intervention of pain relief, oxygen or blood within hours is the difference between life and death.
You mentioned in one of your interviewsthat – ‘Funding is difficult for non-communicable diseases, like sickle cell disorder, since they are usually privy to limited grant’. How do you manage the funds for your organization?
Funding is an issue that we still have to grapple with as we raise funds from private individuals and organizations for our projects. This is challenging because it is unpredictable and you rely on benevolence. In addition, sickle cell is not a very popular disease and thus the people that donate are usually those that have been affected in one way or the other. We are working to increase awareness about the disease so that we garner support from a wider pool of people. We are also working on social enterprises and partnering with organizations with similar goals to make our resources go further. Finally, we are working on lobbying the government to better fund SCD as a lot of the work we do is augmenting the lapses of poorly funded hospitals.
What is your vision for Sickle Cell Aid Foundation? How do you plan to take it forward?
My vision for SCAF is to help ensure greater awareness about SCD and to improve the lives of those living with it. We have done this by expanding our team from just 3 students in law school to large teams across 5 states. It is this model that we aim to continue by creating teams of young people all over the country who can expand the goals of the organization in Nigeria, across the region and ultimately around the world.
You were one of the Queen’s Young Leaders 2015 and received an award from Queen Elizabeth, how was your experience and any specific incident you would like to share?
It was a very exciting experience and the best part has been working with the program to select future young leaders. There are so many young people doing incredible things across Africa within healthcare and other sectors and I am positive that our future looks bright.