This is an opinion piece written by Dr Shyamala Anand, Senior Technical Advisor for Neglected Tropical Diseases, American Leprosy Missions (ALM). The views in opinion pieces published to the ICTC website do not necessarily represent the position of the International Coalition for Trachoma Control.

There are three neglected tropical diseases (NTDs) with sight-threatening complications: trachoma, a purely ocular disease; onchocerciasis, better known as ‘river blindness’, affecting the skin and eyes; and leprosy, which primarily affects the skin, peripheral nerves, and the eyes. As cases of these NTDs become increasingly rare, the use of digital tools and educational resources will soon become crucial for building health workers’ capacity to recognize eye conditions early enough to prevent devastating vision loss.

Recent experiences from the global trachoma program highlight that it is becoming increasingly difficult to train new field graders and to recertify existing graders with live cases in low prevalence settings. In many situations, trainees must travel long distances to gain the required experience for training and certification, which is becoming increasingly expensive, time-consuming, and unsustainable. These challenges also exist for the other ocular NTDs: onchocerciasis and leprosy. 

In 2023, Tropical Data developed a photo database that provides images of the trachomatous eye that can be shared and accessed by stakeholders in the trachoma community for education and research. The database has the potential to overcome many of the challenges for training and certification, which has been highlighted by several research projects and clinical trials using photography and image grading as a replacement for TF grading in the field. Furthermore, this innovation has the potential to benefit all ocular NTDs. 

Integrating programmatic approaches (screening, training, treatment, and rehabilitation) for ocular NTDs in endemic areas where more than one of the three co-exist is very likely to prove cost-effective. We know that fragmented or siloed approaches in healthcare are neither cost effective nor sustainable for health systems in low- and middle-income countries. As such, the WHO NTD road map 2021-2030 emphasizes integration to achieve road map targets. Interestingly, while an integrated approach has been used for skin-related NTDs, including onchocerciasis and leprosy, the same has not been done for vision-related NTDs. This must not be ignored; we need to recognize ‘ocular’ NTDs.

Ocular leprosy

The extent of the problem of ocular leprosy both globally and within countries remains unknown. Eye complications appear to be rarer than other leprosy complications. This may be because they are seldom screened for and therefore missed, or they may be under-reported. We have no way of knowing as very little reliable data are currently available from large samples or population studies on the eyes at the time of new case diagnosis or at release from treatment. What is significant however, is that ocular complications can occur at any time- before leprosy is diagnosed; while on treatment with multi drug therapy; and even long after disease cure.

Another cause for concern is the lack of a global repository of ocular leprosy photographs. This is alarming because all ocular leprosy complications are potentially sight threatening. As leprosy becomes rarer, lack of data and photographs will negatively impact training of frontline/primary level healthcare workers on whom we depend for timely diagnosis and referral and in turn, people affected by leprosy who will be visually impaired if detected too late. The importance of vision for people who may already have leprosy related sensory loss and hand and foot deformities cannot be overemphasized.

The idea of integration of ‘ocular’ NTDs

During the October 2023 NNN meetings, the very logical idea of integration was on my mind. What if we could include the other two NTDs which affect the eyes on Tropical Data’s already-developed platform for trachoma, utilizing their photo database experience and lessons learned? We could then have repositories of representative images of all three ‘ocular’ NTDs on one integrated digital platform available for training, e-learning, research, and integrated programme initiatives—all of which could contribute to the timely detection and management of these sight threatening NTDs.

Following discussions with Tropical Data, the International Federation of Leprosy Associations (ILEP) now has a project funded by ALM, beginning 1 April 2024, to develop an ILEP ocular leprosy photo database on the Tropical Data platform that is planned to be operational in six months. This is a first step towards recognizing and integrating ‘ocular’ NTDs.

Many of us may already be in positions to take first steps towards integrating ‘ocular’ NTDs in our projects and programs at minimal additional cost. We need evidence and lessons learned from pilot interventions that experiment with different models of integrating ‘ocular’ NTDs where these diseases occur together. This could be in areas of training frontline eye health workers, screening, referrals for treatment, health education and self-care, and rehabilitation.

As we accelerate towards the 2030 goals, we should also go a step further and integrate these ocular NTDs with the general eye care program, which would mean that people affected by NTDs are included and have better access to eye care in the general health system. This would advance shared goals for the global NTD road map and achievement of universal eye health coverage.