World NTD Day:

Ending Neglected Tropical Diseases Requires Reaching Everyone

Samuel Lubari, CBM Trachoma Project Officer, and Johan Williems, Global NTD Programme Manager, brought Nyekerena, who needed a TT surgery, from an island in a flooded area in Rubkona County, South Sudan.

Learn more about the impact of NTDs in the context of globalisation and how CBM's efforts in South Sudan are critical to the fight against these often-overlooked diseases.

Taking a few pills of the antibiotic azithromycin once a year – which costs half a dollar – could cure you of the blinding eye disease trachoma and protect you from re-infection. So why is the disease still spreading in South Sudan? Why are children going blind from a preventable disease? 

Torrential rains from the Central African region are flooding the northern parts of South Sudan, changing the prevalence of certain diseases in areas where access to health care is extremely limited. These floods and the ongoing conflict have forced over one million people to move to settlements for displaced persons, which can get quickly overcrowded. The settlements have poor infrastructure, with little to no access to clean water or sanitation. NTDs such as trachoma and schistosomiasis thrive in conditions of poor hygiene and limited access to healthcare. These diseases are often ignored as they are not immediately life threatening and there is an assumption that these are simple infections that will go away on their own. Without treatment, however, they often lead to irreversible disabilities such as blindness.

Transport from the settlements to the distant, understaffed health centres is both costly and difficult. Poverty compounds this issue, which makes it difficult for people to afford medical care. “People don't have the means to see a doctor or nurse, so many are unaware of their health conditions,” says Johan Willems, Global NTD Programme Manager at CBM.

The Neglected Diseases of South Sudan

NTDs such as river blindness, trachoma, lymphatic filariasis, soil-transmitted worm infections and schistosomiasis typically do not cause immediate severe illness and can therefore go unnoticed for years. Over time, however, they can severely affect one’s health and ability to work or learn. Climate change is altering the geographical spread of these diseases and increasing their threat beyond tropical regions. Snails that transmit schistosomiasis, for example, are already present in parts of Europe.

The challenges posed by NTDs are reflected in the plight of four-year-old Thilran. He lives with his family in a small hut where they all share a single room. All family members have trachoma, which is not surprising, as the disease is easily transmitted through physical contact, clothing, and flies. The young boy may have been infected at a very young age, and left unattended, the infection had further developed because no one recognised the problem. In Thilran’s case, it was so severe that he needed immediate treatment and surgery.

“Seeing children suffer makes me very sad especially when you know that it's needless suffering,” says Johan.

Thilran was diagnosed with trachoma and needed trachoma trichiasis (TT) surgery.


CBM Programme in South Sudan

Together with the Ministry of Health of South Sudan, CBM started an integrated NTD elimination programme. In 2020, CBM supported the inclusion of antibiotics in the mass drug administration (MDA) programme to treat trachoma and deworming drugs for lymphatic filariasis and soil-transmitted worm infections.

Community health workers are the first point of contact for people living far away from health facilities – they provide the medicines door-to-door or in community settings and share vital information on the diseases and ways to prevent them. "The problems are not limited to access to health infrastructure, but exacerbated by the fact that communities are not familiar with seeking medical help.... so, we needed to bridge the gap between the communities and the healthcare system," says Johan, adding: "understanding and responding to people's concerns and norms is critical to the success of the treatment programme."

The drug distributors travel to the villages on foot, by bicycle or by boat to distribute the medicines to as many people as possible. CBM also supports eye examinations and outpatient eyelid surgery for community members who need them.

CBM’s current campaign is not just about treatment, but also about prevention, raising awareness and eliminating the disease.

"Our goal," says Johan, "is not only to treat those currently affected but also to prevent new infections to ensure a future in which no one goes blind from these diseases."

Mass drug administration in remote villages in Unity State, South Sudan.

Recent Accomplishments and Future Perspectives

CBM's success lies in its sustainable approach, focusing on partnerships and supporting local institutions to strengthen national health systems. This model facilitates the implementation of other public health measures.

“It is the ministries of health who should be making the decisions about what they want to see happen in their countries. As a grant maker, we encourage our partners, but also ourselves to have that kind of a conversation and build that kind of a relationship with the ministries of health,” says Carol Karutu, Vice President of Programmes at The END Fund, a philanthropic fund solely dedicated to ending neglected tropical diseases and a long-standing partner of CBM.

The recent peace agreement and the formation of the Unity Government in South Sudan in 2020 paved the way for access to NTD-endemic areas. In 2022, CBM supported 5.3 million treatments for lymphatic filariasis, 5.9 million treatments for river blindness and 687,568 trachoma treatments with 100% geographical coverage. CBM is funding NTD treatments in South Sudan with additional support from the END Fund.

Awareness of neglected and infectious diseases needs to be raised in non-endemic countries, as the disease prevalence might change with changing climate conditions. Johan adds, “When a person takes preventive medication, it helps to protect others from infection. In the context of globalisation, everyone should be aware of the risks related to NTDs.”

On World NTD Day, CBM reaffirms its commitment to ending suffering from easily preventable diseases and ensure that children like Thilran will never risk going blind from a bacterial infection that can be prevented for mere cents on the dollar.