Halting Neglected Tropical Diseases Through Behavior Change

neglected tropical diseases, trachoma
Participants preview a trachoma prevention video they have been shooting in Uganda.

Five years ago, a group of pharmaceutical companies, government agencies and nonprofits pledged to work together to, by 2020, eliminate 10 neglected tropical diseases. Taken together, these communicable diseases impact more than 1.5 billion people around the world, particularly those living in poverty, without access to safe water and sanitation facilities.

A new report from the group Uniting to Combat Neglected Tropical Diseases found that the partnership reached more than a billion people in 2016 alone – mostly with medications to treat the diseases – making strides toward achieving the goal of control, elimination and eradication of illnesses you’ve probably never heard of.

But there is still so much work to do. To that end, the Johns Hopkins Center for Communication Programs has created campaigns to encourage people, specifically in Uganda, to adopt behaviors to prevent the spread of two of these neglected diseases: trachoma and schistosomiasis.

Both diseases can be treated and prevented. Much of it is a matter of getting the information to the people who need it and helping them believe that they are not helpless.

“Many people in Uganda don’t know much about these diseases and they certainly don’t know that they are at risk or that they can do something to reduce that risk,” says Cheryl Lettenmaier, the CCP staffer who oversees programming in Uganda. “I just believe that there are people who will adopt healthy behaviors if they understand there is something they can do to prevent these diseases. But we haven’t really given them that chance. People keep putting themselves at risk because they don’t know what the risks are.”

A scourge to Ugandan fishing communities

Schistosomiasis (also known as snail fever or bilharzia) is an illness that develops when people come into contact with water contaminated with disease-causing worms. These microscopic worms penetrate the skin without detection and move throughout the body causing severe sickness. Its root cause is poor sanitation, including the widespread practice of using lakes and rivers instead of toilets or latrines. Those same bodies of water are used for washing clothes and dishes, bathing and fishing, playing and more, creating a cycle of disease.

To focus attention on schistosomiasis, CCP has been working with Uganda’s Ministry of Health with financial support from an American philanthropist. First, CCP reviewed data gathered by the PMA2020 project to understand the breadth of the problem. They learned that 20 percent of Ugandans over the age of 5 have schistosomiasis as do 30 percent of those between the ages of 2 and 5. “That’s five times more than the percentage of people with HIV in Uganda,” Lettenmaier says. “And look at all of the resources going into HIV.”

A medication that is distributed through mass public campaigns yearly or every other year, depending on how common the disease is in each location, can treat the illness. But this takes care of only one half of the equation.

The Bilharzia Prevention Campaign in Uganda focuses on the other half: prevention. With the tagline “Put a stop to bilharzia before it puts a stop to you,” the campaign focuses mainly on how people can avoid contact with schistosomiasis-contaminated water – wearing boots and gloves when working in the water, collecting water for washing and bathing early in the day when the worms are less active, letting the water stand for 24 hours to allow parasites to die and using well or borehole water for bathing and washing whenever possible.

The campaign also emphasizes that people should take the medication when it is offered and to never urinate or defecate near or in the water.

The campaign, which began in August and will continue in some locations through April, broadcasts radio ads, skits and call-in shows featuring local health officials with expertise in schistosomiasis. The campaign also broadcasts community conversations from affected districts. In the 43 districts where CCP is working on this, the staff has already translated the campaign materials into nine local languages and plan to translate it into several more.

Lettenmaier says the practice of open defecation and urination is a longstanding one that will be a challenge to solve – no matter the risks – and avoiding contact with surface water requires huge lifestyle changes.

“Especially in fishing villages, the water is everywhere and they’re in it all the time,” she says. “To tell them they can’t go in the water is a major change.” But she hopes that people will start to think more about the disease and at least consider some changes to their behavior.

Avoiding preventable blindness

Trachoma, a disease of the eye caused by infection with the bacterium Chlamydia trachomatis, is a public health problem in an estimated 41 countries and is responsible for blinding or visually impairing about 1.9 million people. It is commonly spread through contact with contaminated hands or clothing and by flies. It is estimated that 10 million people in Uganda are at risk of developing trachoma.

To solve trachoma, governments and NGOs around the world have focused on a SAFE strategy – surgery for in turned eyelashes, antibiotics, facial cleanliness and environmental improvement. A yearly dose of antibiotics can clear an infection – even one that isn’t detectable – and that medication has been donated to elimination programs around the world.

With funding from The Queen Elizabeth Diamond Jubilee Trust and in partnership with The Carter Center and the Ministry of Health, CCP in Uganda is focusing efforts on trachoma prevention in two regions still affected by the disease. “Clean hands, clean face, clean homestead keep trachoma away!” is the call to action carried on radio and by community water, sanitation and hygiene workers.

Since 2016, CCP has produced and broadcast radio ads and call-in talk shows. CCP also produced visual aids and educational videos that water, sanitation and hygiene workers use with schools and local communities. The aim is to encourage people to use latrines and healthy hand and face washing techniques.

The CCP team is also working with the Ugandan government to put out updated sanitation guidelines for schools and communities and to produce another video to raise greater attention and resources for trachoma elimination in Uganda.

As with schistosomiasis, mass administration of antibiotics only treats existing trachoma infection. Elimination of trachoma will happen only if people safely dispose of human waste to reduce the fly population and keep hands and faces clean.

“The adoption of these healthy behaviors is key if we are going to realize the goal of global elimination of trachoma by 2020,” says Lillian Nakato, manager of CCP’s Trust Trachoma Project.

Learn more about the campaign and access campaign materials here.

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