Trachoma, the world’s leading infectious cause of blindness, affects the world’s poorest and most marginalized communities. Within these communities, trachoma disproportionately affects women, exacerbating inequities and inequalities, and presenting a major obstacle to the elimination of trachoma as a public health problem and the achievement of Sustainable Development Goal 5: Gender equality.
Women are twice as likely as men to require surgery to treat trachomatous trichiasis, the late blinding stage of trachoma. Although risk factors vary by setting, it is widely acknowledged that the excess risk for, and complications of, trachoma borne by women is associated with social and cultural factors, including disproportionately high contact with children, and gender-specific barriers to accessing health services.
The trachoma community has proactively engaged in efforts to address gender equity issues. From 2012-2016, the Global Trachoma Mapping Project collected gender-disaggregated data from 2.6 million people across 29 countries. This is now being continued by Tropical Data, a service that provides health ministries with near real-time data about the prevalence of trachoma and an increasing number of other neglected tropical diseases (NTDs). Since 2016, Tropical Data has supported countries to collect gender-disaggregated data in over 2,110 Evaluation Units, examining nearly 7 million people in 45 countries.
During Tropical Data surveys, people with trachomatous trichiasis are identified and the details about the management of their care are collected. Responses indicate who has been offered surgery, who has previously had surgery (post-operative trachomatous trichiasis), and who has declined surgery. In conjunction with the perceived gender of the respondent, this information can be used to explore if there are gender differences in how trachomatous trichiasis is being managed. Results from these analyses can be used to inform program design.
This International Women’s Day, we join the global campaign and choose to challenge ourselves to develop innovative strategies to include women in the design, delivery and leadership of programs and to refine data driven strategies to ensure that all women at risk of trachoma can access the services they need.
Identifying specific gender barriers has resulted in several programmatic approaches to improve gender equity. In Pakistan, traditional attitudes, including gender roles, led to healthcare being male dominated, both in the delivery of services and among the people presenting for care. To improve the uptake of interventions for women, since 1994 Pakistan has delivered interventions through the Lady Health Worker Programme, a community-based healthcare system. Over the past two decades, the program has expanded and significantly increased women’s participation in health, which in turn has had considerable impact on increasing community awareness of eye health, including trachoma, and for establishing effective referral systems, from community-level outreach through to primary eye care services. This program challenges traditional roles of women, ensuring their inclusion in the delivery of services and improving access for women.
In other settings, the recognition of gender structures has provided entry points to engage women’s groups to prevent and treat trachoma and empower women to participate in programs. For example, in Uganda, messages that promote facial cleanliness are being directly integrated into women’s groups, such as the Mother Care Group, which educates mothers about hand washing and sanitation. Integrating trachoma messaging directly into these programs has proved to be an effective and efficient way to both target interventions where they are required most and to engage the people most affected by trachoma.
The global trachoma program has also benefitted from several new tools to support the achievement of gender equity, including the Gender Equity Toolkit launched by the International Agency for the Prevention of Blindness, which synthesises practice, guidelines and resources to deliver gender-sensitive eye health programmes across the sector. Similarly, The Carter Center’s “Women and Trachoma: Achieving Gender Equity in the Implementation of SAFE” supports programs to provide gender-equitable trachoma services by identifying barriers to uptake and identifying community based solutions to ensure women can access care.
In July 2020, the World Health Organization (WHO) Weekly Epidemiological Record reported that 67% of surgeries conducted were on women within the 32 countries reporting 2019 gender-disaggregated data. This is an encouraging indication that the trachoma community is achieving gender equity across programs. However, there are several limitations to this figure and it is important that we are not complacent. First, this aggregate statistic may be masking important heterogeneity among some subgroups. It is possible that the unique barriers that women may face in seeking care, such as the inability to travel unescorted, may be more pronounced in some cultures or some geographic regions. Developing tailored strategies for women in these settings is critical to ensure that no one is left behind.
Furthermore, this figure is not static. As the surgical backlog is cleared, national programs will adapt service delivery to their changing trachoma landscape. Programs that have successfully achieved gender-equitable delivery in the past may be challenged by this aspect in the future. For example, a shift from campaign-based to health centre-based surgeries may disproportionately increase the burden on women as many gender roles, such as childcare responsibilities, will limit women’s access to services.
WHO’s Ending the neglect to attain the Sustainable Development Goals: A road map for neglected tropical diseases 2021-2030, includes a target of 90% of countries to collect and report data disaggregated by gender by 2030. Going forward, it is important that we continue to use disaggregated data to develop tailored and targeted interventions, so that elimination can be achieved equitably across the population. Disaggregated data enables analyses to be conducted to identify whether there are specific populations at risk of disease in the first place, the reason for increased risk and whether they are receiving equitable management and care.
This International Women’s Day, we join the global campaign and choose to challenge ourselves to develop innovative strategies to include women in the design, delivery and leadership of programs and to refine data driven strategies to ensure that all women at risk of trachoma can access the services they need. The elimination of trachoma as a public health problem can accelerate the achievement of Sustainable Development Goal 5: Gender equality, in many ways. Women must be empowered at all levels of programs, to contribute equally and to have equitable access to health services so that all women can lead healthy, productive lives and fulfill their potential.
This blog was written with contributions from:
- Kristin Sullivan, PhD candidate at the University of North Carolina at Chapel Hill
- Emma Harding-Esch, London School of Hygiene & Tropical Medicine, Tropical Data
- Cristina Jiminez, Sightsavers, Tropical Data
- Ana Bakhtiari, International Trachoma Initiative, Tropical Data
- Sarah Boyd, International Trachoma Initiative, Tropical Data
- Louisa Syrett, The Fred Hollows Foundation
- Tim Jesudason, International Coalition for Trachoma Control