International Coalition for Trachoma Control

In October 2021, I had the opportunity to visit the village of Bombiti in the Democratic Republic of the Congo (DRC) to observe efforts to find cases of trachomatous trichiasis (TT), the late blinding stage of trachoma. Not many people in Bombiti knew trachoma by name, but several understand and know what it means to experience the pain of eyelashes turning inwards, painfully rubbing against the cornea, leading to vision impairment and blindness when left untreated.

During the trip, I witnessed a woman by the name of Ms. Atongo Denise working on her farm when Mbwase Mbamba Ku, a TT case finder, stopped by her village to identify community members with suspected TT. When neighbours heard that Mbwase was providing eye health services, they called for Atongo Denise. Mbwase examined her and put her name down as a suspected TT patient and informed her that a supervisor would visit to confirm her eye condition, and if necessary, bring her to a surgery site to correct her in turned eyelids. She then went back to the field to tend to her farmland.

It was humbling to witness how months, if not years of planning, came down to this seemingly innocuous moment when Mbwase advised Atongo. For me, this moment captured the essence of a human rights, disability-inclusive approach to NTD prevention and treatment. 

The provision of TT surgeries as part of an NTD campaign in communities like Bombiti often serves as an entry point to assess the need for general eye care services, including screening and treatment for cataract and glaucoma. Such an approach aligns with the World Report on Vision’s recommendation for integrated people-centered eye care, which provides an equitable continuum of preventive, treatment and rehabilitative interventions for multiple eye conditions.

Visiting the DRC reinforced that the first step in disability inclusive services is awareness raising. The National Community-Based Readaptation Programme (Programme National de Réadaptation à Base Communautaire, PNRBC), in partnership with CBM International has transformed training workshops through a pilot project that makes “inclusion” a pillar of programme success. The workshops are increasing awareness on the multiple visible and invisible disabilities that may prevent community members from accessing NTD services. In the DRC these include preventable blindness, hydrocele and lymphedema from lymphatic filariasis, and injuries from natural disasters such as the recent volcano eruptions in Goma. In other contexts, such as in Ethiopia, a comprehensive and disability-inclusive SAFE approach entails making community latrines accessible for people with disabilities.

Effective disability inclusion requires co-developing programmes with disabled people’s organisations (DPOs), which has been shown to increase inclusion, improve buy-in, and reduce stigma in the community. Recent evidence of such approaches in Nigeria, Kenya, and India demonstrates that NTD programmes can and should take on a comprehensive, person-centric approach to NTD prevention and treatment that embed services within the broader, socio-economic contexts of people living with disabilities. 

From a policy perspective, notable progress has been made in recent years to mainstream inclusive, participation and human rights-based approaches into global health programmes. Titled “Ending the neglect to attain the Sustainable Development Goals,” the recently launched road map for neglected tropical diseases 2021–2030 recommends improved coordination with other sectors including disability to ensure that NTD services reach the most vulnerable. Additionally, the NNN BEST conceptual framework (Behaviour, Environment, Social inclusion, Treatment, and care), developed in 2016, guides programme managers in translating inclusive approaches into programmes.

Comprehensive and inclusive NTD programmes will contribute significantly to Sustainable Development Goal 3.3, which calls for an end to NTDs. Additionally, cross-sectoral collaborations between NTDs, disability inclusion, WASH, and gender mainstreaming advance the achievement of other SDGs aimed at poverty reduction, quality education, gender equality, and clean water and sanitation. To achieve these targets however, we must ensure community members, such as Atongo Denise, are placed at the centre of programmes. From design, to implementation, monitoring and evaluation, people with disabilities must be included to ensure that we address systemic and structural obstacles and achieve inclusive public health and social justice programmes.