Her Story: Ten years ago, Obiageli Nnodu, M.D., had an established career as a hematologist working mainly in the early detection, diagnosis, and treatment of bone cancer. But one day, troubled by statistics showing that some 150,000 children in her native Nigeria were being born each year with sickle cell disease, she switched gears and devoted herself to doing something about it. Today, Nnodu is the principal investigator in Nigeria for the Sickle Pan African Research Consortium (SPARCo), a multi-site consortium in Abuja, Nigeria; Kumasi, Ghana; and Dar es Salaam, Tanzania working to develop an infrastructure for sickle cell disease research, health care, education, and training in Africa. In her role, Nnodu has helped recruit nearly 7,000 patients into an electronic, patient-consented sickle cell disease database—taking the consortium nearly halfway to its recruitment goals.
Her site also helped to develop guidelines around the standard for clinical care of patients with sickle cell disease, at the individual level and for healthcare professionals in primary health care settings, district, and regional health care centers. The multilevel guidelines are currently under review within the consortium and by subject matter experts in Nigeria. “Many African countries with a high burden of sickle cell disease have expressed the desire to develop their own guidelines,” Nnodu said. “If we can make the guidelines available to these countries, they will not have to expend a lot of resources doing the same thing.”
Her motivator: “I was not happy when I read that Nigeria will have the highest contribution to the global burden of sickle cell disease by 2050—if we continue at the present birth rate and the level of inactivity in newborn screening. As a country, we can do better than that. After all, this is a disease where children die undiagnosed early in childhood and largely from preventable causes such as bacterial infections.”
Her biggest challenge: The inadequate distribution of laboratory and imaging facilities, Nnodu said, is a huge hurdle in diagnosing and treating people with sickle cell disease in Nigeria. On top of that, there is a dearth of laboratory equipment that can properly define the type of sickle cell disease that a patient has, and that also can support treatment options like stem cell transplants. “When people do suspect that they have sickle cell disease and they get tested, sometimes they get the wrong test results. And, their results may vary from lab to lab. That’s a big barrier to treatment.”
Her future work: Although Nnodu does not currently focus on blood cancer, she still plans to develop and deploy innovative diagnostic tools to identify patients with sickle cell disease before the onset of other major illnesses and deaths in areas with limited resources. In this capacity, she said, she would help healthcare professionals find ways to administer effective therapies to reduce the burden of sickle cell disease in Nigeria and across sub-Saharan Africa.