Neglected Tropical Diseases, as their name implies, don’t get enough attention. From rabies to leprosy to schistosomiasis, these 18 diseases affect more than one billion people in some of the poorest populations in the world, leaving many of them with permanent disabilities, reducing their ability to work or learn and impacting their quality of life. Among this diverse range of diseases is trachoma, the leading infectious cause of blindness worldwide.
Trachoma is caused by the bacterium chlamydia trachomatis, which over repeated infections leads eyelashes to be drawn inwards so that they irritate the eyes and can result in permanent damage to the cornea and, ultimately, blindness. With limited access to eyecare in many parts of the world, women make up a disproportionately large share of the world’s 39 million blind. But the impact of gender inequality is particularly stark with trachoma, where women are four times more likely than men to need eye surgery to prevent blindness from the disease. At the same time, women are at the forefront of efforts to contain trachoma. And in some places, they are succeeding.
Despite progress in tackling trachoma worldwide, more than 200 million people in 42 countries remain at risk of the disease. The World Health Organization (WHO) says the infection spreads from young children, a group which it calls the “principal reservoir of infection,” through personal contact, and from flies that carry discharge from the eyes or nose of an infected child. According to the International Coalition for Trachoma Control, traditional gender roles – with women as the main caregivers in families and thus having more contact with young children – along with lack of education and less access to health services all make women more vulnerable to the disease.
But women are also leading the fight to stop it. “Starting from the local to the global, women at all levels are working to eliminate trachoma, through advocacy and technical support,” says Agatha Aboe, trachoma global advisor at Sightsavers, an NGO working in 30 countries.
Ghana is one of seven countries to report to the WHO in 2016 that it has managed to essentially eliminate trachoma. The global trachoma elimination strategy is referred to as SAFE: (S) surgery for advanced stages of the disease, (A) antibiotics, (F) facial cleanliness and (E) environmental improvement, including access to water and sanitation to reduce transmission. In the case of Ghana, “at the community level, mothers took on the message about the need to wash their children’s faces,” says Aboe, who had previously served as country director for the International Trachoma Initiative. “Sometimes they had to walk miles or hours for water.”
And these mothers also mobilized others. They conducted radio learning classes to listen together to messages about trachoma in their local language and discuss strategies. Some women convinced NGOs to improve access to water in their communities.
In Ghana, Aboe notes that community health workers, most of them female nurses, also played a key role in tackling the disease. “They worked on both behavior-change activities and distribution of antibiotics. They were really on the front line, going to the most remote and difficult-to-reach places,” she says.
Several other factors have contributed to Ghana’s success in eliminating trachoma, including the work of pharmaceutical companies, health agencies and governments to make antibiotics available to more people and campaigns to help communities gain access to clean water and sanitation. Aboe also points to a strong national task force and good leadership in the country.
In Tanzania, microfinance groups have been important in improving women’s access to vision-saving treatments. According to Fortunate Shija, the Kilimanjaro Centre for Community Opthalmology’s (KCCO) project coordinator for microfinance and eye health, when the center first went to the Ngorongoro District in Arusha –one of the two northern regions with endemic trachoma – in 2012, more men than women were coming to their clinics, despite trachoma’s higher rate in women.
To reach more women in the community, KCCO decided to work with women in microfinance groups who were already collaborating on different activities in rural areas. The women were trained in the benefits of eye care services and were then able to convey the importance of treatment to other women, bypassing the men who traditionally made the decisions on spending, healthcare and other important issues. “To overcome that problem about decision-making in families, we train the microfinance women to realize the importance of finding people with eye problems and trying to convince them of the benefits of being treated,” Shija says.
According to Shija, KCCO now sees more women than men for treatment of eye disease, including trachomatous trichiasis, the advanced form of disease resulting from repeated trachoma infections. It’s an important step toward Tanzania’s goal of eliminating trachoma by 2020, says Shija. Will the country succeed? “Yes,” she says. “I think it’s going to happen.”