International Coalition for Trachoma Control

People with disabilities experience significant inequities in health care, including limited availability and accessibility of services and discrimination within the healthcare setting. In many instances, the inequitable access to health services are linked to inequitable service delivery models, inaccessible community based interventions, and a lack of training for healthcare professionals. These inequities represent a violation of human rights and a major obstacle to the achievement of universal health coverage. 

Trachoma, the world’s leading infectious cause of blindness, affects the world’s poorest and most remote communities. Without intervention, many people affected by trachoma are further disadvantaged by the increased inequities experienced by people with disabilities. Additionally, many people with disabilities caused by other conditions experience increased risk of trachoma because they are unable to access health education to prevent trachoma, access information about the availability of trachoma interventions, or are unable to access the interventions themselves, particularly when interventions are delivered through a central distribution point.

Since 2014, the trachoma program in Tigray, Ethiopia, led by the Federal Ministry of Health through the Regional Health Bureau, with support from Light for the World, has engaged several organizations of people with disabilities (OPDs) throughout the program cycle, including planning meetings, implementation, and review meetings, to ensure equitable access to trachoma interventions for people with disabilities. The systematic engagement of OPDs, supported by a baseline audit of its trachoma program from 2018-2020, has highlighted a lack of knowledge among health workers, including trachomatous trichiasis (TT) surgeons, about how to implement programmes that are inclusive for people with disabilities. 

Engaging OPDs has enabled Tigray’s trachoma program to identify and respond to several challenges for people with disabilities and apply a mixed social mobilization strategy for trachoma. Notably, the trachoma program developed sign language manuals and an image toolbox to support behaviour change communications activities. The sign language manuals help service providers to communicate with deaf persons, while the image toolbox provides materials to educate persons with intellectual disabilities about the disease.

Working with OPDs has also identified areas where program teams need further training. Most significantly, program teams implementing trachoma interventions now receive a two-hour training session on disability inclusion and collecting disability disaggregated data. This allows the teams to better identify distribution points that are accessible to people with disabilities, and proactively identify people with disabilities who require home care to access interventions. These changes are now being included in all programmes for trachoma across Tigray and experiences from the program are being used to advocate for disability inclusion at the national level. 

In addition to lacking access to healthcare services, people with disabilities often have an increased risk of trachoma, due to inequitable access to safe water, sanitation and hygiene (WASH). To improve access to WASH interventions, CBM Global Disability Inclusion is implementing inclusive WASH programs in Kenya and Nigeria. Examples from the program include collaborating with the Africa Inland Church Health Ministries, and Diocese of Meru Spark, in Meru district, Kenya, to engage people with disabilities directly. This has enabled the program to ensure that communal water points are accessible, to build accessible toilets and ensure that health education sessions and materials used are appropriate for people with disabilities. The project also developed a communications plan that engages policy makers and creates common platforms for dialogue and shared knowledge on inclusive WASH activities.  

On December 2, 2022, the World Health Organization (WHO) launched its Global Report on Health Equity for People with Disabilities. The report provides updated estimates of the global disability prevalence and summarizes the evidence of the complex and cumulative health inequities that persons with disabilities experience, including those challenges that people affected by trachoma might experience, in order to develop 40 disability-targeted actions in 10 strategic areas of health system strengthening. Recognising each country has a unique context, and each country will choose specific actions and areas on which to focus their efforts to achieve an optimal outcome for disability inclusion, the report is guided by three core principles:

1. Include health equity for persons with disabilities at the centre of any health sector action;

2. Ensure empowerment and meaningful participation of persons with disabilities and their representative organizations when implementing any health sector action; and

3. Monitor and evaluate the extent to which health sector actions are leading to health equity for persons with disabilities.

The Global Report on Health Equity for People with Disabilities complements Ending the neglect to attain the Sustainable Development Goals: a road map for neglected tropical diseases 2021-2030, published by WHO in 2021, which recognises the importance of disability inclusion to achieve NTD targets, including the elimination of trachoma as a public health problem by 2030. Moreover, the report reiterates the importance of integrated people-centred eye care* (IPEC), as recommended by the World Report on Vision, published by WHO in 2019. 

The involvement of people affected by NTDs, including people with disabilities, is not a new concept in global health. The 1978 Alma-Ata Declaration stated that all “people have the right and duty to participate individually and collectively in the planning and implementation of their health care”. However, the active participation of people with disabilities is not always a reality. Human rights based approaches to NTDs, including the disability inclusive programs in Ethiopia, Kenya and Nigeria, emphasize that any interventions should be based on the principles of participation, non-discrimination and accountability. Furthermore, such approaches recognize that the highest attainable standard of health is one of the fundamental human rights of every human being, without distinction of ethnicity, religion, political belief, economic or social condition and disability status, as stated in World Health Assembly Resolution 74.8, adopted in 2021. 

To ensure all people realize their human rights, and to maximize its contribution to the achievement of universal health coverage, the global program to eliminate trachoma as a public health problem can utilize evidence from data from people with disabilities, to mainstream engagement of people with disabilities throughout the program cycle to ensure that interventions are acceptable and accessible to people with disabilities. As the Global Report on Health Equity for People with Disabilities states, “acting to achieve health equity for persons with disabilities means ‘doing things differently in the health sector but not doing different things’”. Existing and future health system strengthening efforts can be more impactful if they are disability inclusive.

*About Integrated People Centred Eye Care

Integrated people-centred eye care is an approach to achieve universal eye health coverage, which emphasises managing and delivering eye care services so that people receive a continuum of health interventions covering promotion, prevention, treatment and rehabilitation. The approach recognises people as participants of these services, throughout their life course, paving the way to ensure people with disabilities are included throughout the design, planning, implementation, monitoring and evaluation of their health care. The Global Report provides a strong basis for collective advocacy efforts to address eye health as part of universal health coverage so that people with disabilities have access to inclusive, affordable eye care and rehabilitation services wherever they are in the world. 

Authors:

• Danny Haddad, Inclusive Eye Health & NTD Director, CBM Global Disability Inclusion

• Geoffrey Wabulembo, Medical Director for Eye Health and NTDs, Light for the World

• Junu Shrestha, Policy and Advocacy Manager, International Agency for the Prevention of Blindness 

• Tim Jesudason, Special Projects and Campaign Partnerships, International Coalition for Trachoma Control