Neglected tropical diseases (NTDs) like trachoma, the world’s leading infectious cause of blindness, are causes and consequences of poverty. Communities affected by poverty often have limited access to health services and also have disproportionately high numbers of people with disabilities. Despite carrying a greater need for health services people with disabilities and people affected by NTDs often face further barriers to accessing public services. Both the occurrence of disability and NTDs exacerbate the cycle of poverty and marginalization and represent a significant obstacle to governments achieving the Sustainable Development Goals (SDGs), and targets towards the elimination of NTDs and the delivery of universal health coverage (UHC).
In order to achieve these targets, health systems must be strengthened to adequately deliver services to people with disabilities. Resources need to be allocated to strengthen capacity among health workers to respond to the needs of people with disabilities, to ensure that public services are accessible and to expand data collection to include disability data to inform service delivery. Although the achievement of these goals requires sustained investment and multiple actors across the health system and other sectors, the trachoma community can learn from recent projects and positively contribute to this process.
In Tigray, Ethiopia, a new pilot project called Every Life Matters is testing approaches and tools to mainstream disability inclusion to ensure trachoma interventions are accessible to people with disabilities. To achieve this, project teams work in partnership with Disability People Organizations (DPOs) in the region, the Ethiopian Center for Disability and Development and responsible government actors to discuss and plan interventions and to ensure full participation through the design, planning, implementation and monitoring of programs.
Using a disability disaggregated data collection tool, the program monitors how services are provided to people with different needs. Data collected and reviewed in collaboration with DPOs, helps to identify barriers and solutions to problems as they arise. For example, if a low number of people with hearing impairments access eye care services, it may indicate the presence of communication barriers in the provision of those services, which DPOs are uniquely experienced to identify. The tool is not only appropriate for trachoma interventions and is currently being planned for mainstreaming across the whole health system in Tigray.
Working together with one voice, trachoma and other NTD communities have an opportunity to accelerate government efforts to achieve SDG targets and truly leave no one behind.
Other programs, such as the new UK Department for International Development funded Ascend program, recognize that there are context-specific challenges in different countries. Ascend aims to ensure meaningful and participatory consultation with key stakeholders in the design, delivery and evaluation of the program, including by working with DPOs to ensure the voices of people with disabilities are reflected, and will help identifying and addressing key challenges to their effective inclusion. The surgical, ‘S’, component of the SAFE strategy also addresses those with disabilities in that surgery is conducted regardless of the extent of visual damage caused by trachomatous trichiasis (TT), the late blinding stage of trachoma, including complete corneal opacity. The United States Agency for International Development-supported MMDP project, through its ‘Monitorage’ surgical auditing strategy, followed up with numerous post-surgery patients with significant visual impairment. Although the surgical procedure cannot reverse the visual damage done by TT, patients still reported that surgery had significantly helped relieve the pain they experienced.
Programs that mainstream disability inclusion, rehabilitation and care provide cross-cutting benefits towards the SDGs, however more focus is needed on strengthening national disability legislations in line with the Convention on the Rights of People with Disabilities and development of new mechanisms to ensure accountability and policy coherence. The trachoma community needs to advocate for programs that have specific indicators to ensure programs are fully accessible and inclusive at all stages of programming. This should include data collection, capacity-building, monitoring systems, reporting and budgets. Only when disability inclusion is specifically identified as an indicator throughout program structure, will it become visible as an important milestone that needs to be addressed.
To achieve SDG targets for UHC and the elimination of NTDs, a major paradigm shift is needed to deliver integrated and comprehensive programs that systematically include people with disabilities and prioritize rehabilitation for the disabling impacts of NTDs like trachoma. For trachoma programs, a considered approach is urgently needed to recommend steps beyond surgery to help people with vision impairment caused by trachoma, and more needs to be done to link people with disabilities to DPOs and ensure a continuum of care, which will require a long-term perspective. The ongoing development of UHC packages by WHO and many governments working towards the achievement of the SDGs, provides an opportunity to create awareness and ensure the inclusion of trachoma, disability and rehabilitation as part of essential health services delivered by health systems.
Significant progress has been made in recent years to recognize the importance of inclusive and participation-based approaches into development programs. The NNN BEST conceptual framework (Behaviour, Environment, Social inclusion, Treatment and care), developed in 2016, provides a practical platform for translating these approaches into programs. Moreover, the World Report on Vision, published by the World Health Organization in October 2019, recommends using an integrated people-centered eye care (IPEC) approach, which provides a continuum of promotive, preventive, treatment and rehabilitative interventions against the spectrum of eye conditions while simultaneously strengthening health systems.
The trachoma community has an opportunity to spearhead and support this through engagement at national, regional and global levels, and provide practical support by contributing to health system strengthening, through capacity building, data collection and cross-sectoral collaboration though national trachoma programs. To achieve these goals, a mobilized and aligned approach that prioritizes and fiercely advocates for inclusion of marginalized groups, including people with disabilities, will be required. Working together with one voice, trachoma and other NTD communities have an opportunity to accelerate government efforts to achieve SDG targets and truly leave no one behind.