When Philip Kutjok was a teenager, he witnessed a distant relative going blind in his hometown in South Sudan. At that time, he did not know what was causing the person he cared about to go blind, but he could see the devastating physical and mental toll that blindness was taking on him, other family members and the community. Kutjok was inspired by this experience to pursue a medical career, with a focus on strengthening medical laboratory capacity to help combat outbreaks of dangerous infectious diseases such as Ebola, yellow fever and COVID-19.
Years later, when Dr. Kutjok was a Humphrey Fellow at Emory University, he was introduced to the field of neglected tropical diseases (NTDs) while working in the U.S. Centers for Disease Control and Prevention (CDC) and The Task Force for Global Health.
From Kutjok’s work with NTDs at CDC and The Task Force, he learned about Onchocerciasis (oncho, commonly known as river blindness). And he wondered if those in his community who suffered so much might have had oncho. Oncho is a neglected tropical disease that, according to the 2017 Global Burden of Disease Study, has caused vision loss for an estimated 1.15 million people – nearly all of them in Africa.
Next-Gen Tool Supporting Communities to Eliminate Oncho
In June 2023, Kutjok joined a group of 15 scientists from Africa and representatives from the U.S. CDC for a training session at the campus of Smith College in Northampton, Massachusetts, to help scientists use new tools to diagnose river blindness and help them eliminate oncho.
The new tool and protocol for testing were developed at Smith College and University Hospital Bonn, funded through the Coalition for Operational Research on Neglected Tropical Diseases at The Task Force for Global Health, with support from the U.S. Agency for International Development (USAID). The training was led by Gates Professor of Biological Sciences at Smith College, Steven Williams, who had personally helped to develop the new protocol.
Small flies known as black flies spread oncho to humans through bites. To find out if the disease is present in a community, health workers catch flies, remove their heads and test the heads for DNA, which indicates the presence of the parasite. The June training sessions kicked off with a demonstration of how to correctly do the test.
“The other trainees brought a very high-level of skill to the sessions,” Kutjok said. “One of the scientists from Tanzania gave us all tips on how to separate the head from the body of the fly. I’d never done that before.”
To Stop MDA or Not To Stop MDA?
The new tool and protocol for testing for oncho promises more accurate and cost-effective testing for the disease. When widely deployed, the improved test will help scientists and health workers to better target critical treatments, while allowing resource-constrained health systems to spend more efficiently.
Kutjok is excited by the test’s improved precision and the profound benefits it offers for people and communities impacted by oncho.
“Better testing allows you to concentrate your efforts where they’re needed,” he said. “When you eliminate oncho from a community, you’re eliminating one of the barriers that prevents people from thriving. You’re making it easier for people to work and for children to go to school.”
“There are countries that are in different stages when it comes to oncho elimination and control,” said Kutjok.” “There are people who have already started the treatment with mass drug administration (MDA) and they want a tool to help them address the question as to when to stop administering medications. The MDA [community distribution of treatment] can go on for a long time. Maybe 12 years. Fifteen years or more. They don’t know when to stop the MDA. It is very expensive to keep going without stopping.”
Recently, Kutjok had a chance encounter with a family member who suspects that his relative went blind because of oncho since the relative resides in an oncho-endemic area. Presently, Philip has returned to South Sudan, and still works with The Task Force, with support from USAID, to facilitate lab training on the new techniques for testing oncho.
Kutjok is constantly motivated to continue strengthening medical laboratory support so that communities like his own in South Sudan can be protected from blindness, suffering and other debilitation caused by oncho and other neglected tropical diseases.
