learn about sleeping sickness and stars a giant fly: goats and soda: NPR

Don’t worry, this six foot tall tsetse fly didn’t bite anyone. He was part of a performance to teach Malawians about preventing sleeping sickness.

Hannah Bialic

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Hannah Bialic

Don’t worry, this six foot tall tsetse fly didn’t bite anyone. He was part of a performance to teach Malawians about preventing sleeping sickness.

Hannah Bialic

The first time Nicola Veitch went to a soccer game, she danced on the field in a white lab coat with a colleague in a giant tsetse fly costume. Most fans applauded. Some were confused.

It wasn’t an audition to be the new team mascot either.

Rather, Veitch, who is a lecturer in parasitology at the University of Glasgow, staged this somewhat odd performance as a pilot for sleeping sickness street theater – using a theatrical event to educate people about a disease that affects approx. 1,000 people every year in Africa.

In Malawi’s two endemic districts, where the disease is spread by local tsetse flies, the number of people falling ill from sleeping sickness has fallen in recent years, but cases still persist. Last year there were only 40 cases across the country. But Veitch points out that the disease is “often unpredictable,” meaning the possibility of resurgence remains an ongoing threat.

More than a year after the Scottish game, the group brought the theatrical event to football matches in Malawi, where people cheered as they learned about how to protect themselves from this little killer. Veitch calls it an innovative intervention in remote, hard-to-reach communities with few smartphones.

At the time of the performance, she says a clinical trial was underway for a new drug that “appears to be very promising in treating sleeping sickness.” If successful, people with the disease could take the medicine at home instead of relying on the current treatment method for late-onset sleeping sickness – intravenous administration of a toxic drug that often leads to complications and is occasionally fatal. The new drug would represent “a massive change,” she says. But in the meantime, knowledge is one of the best ways to fight the disease, and the performance seemed to provide the audience with important information.

Sleeping sickness is found in communities in Malawi that border nature or game reserves. These areas were where the performances were held. “So we target the people who are really affected,” says Janelisa Musaya, a parasitologist involved in the project and associate director of the Malawi Liverpool Wellcome Clinical Research Programme, rather than “just throwing the message out across the country.” In other words, she says, it’s a way of allocating resources wisely.

Targeting a ‘hypnotic’ parasite

Sleeping sickness, also called African trypanosomiasis, is caused by a parasite. “It almost looks like a worm,” says Veitch. But it’s not a worm. It is a unicellular protozoan of the genus Trypanosoma.

The parasite depends on the tsetse fly to transport it around. When an infected fly bites someone, the parasite can slip into the bloodstream. It causes a little trouble there, says Musaya, “but when it crosses the blood-brain barrier and goes to the central nervous system, it can affect your sleep cycle. That’s why it’s called sleeping sickness.” (The disease is often confused with malaria, as the symptoms of fever and lethargy are similar.)

When Veitch looks down the microscope at the parasite that causes sleeping sickness, she says, “it’s very hypnotic the way it moves and quite beautiful. I think only a parasitologist can say that.”

That beauty is what got her thinking several years back about alternative ways to inform people about the disease – which many people in Malawi are still unaware of, says Veitch. She has a family member who works for SURGE, a Scottish arts, theater and circus organization that runs an annual performance festival that brings groundbreaking work to the streets and spaces of Glasgow. The sketches are usually short, sharp and interactive, she says.

One year, Veitch was drawn to an outside act that had repurposed an ambulance to teach people how to respond to someone going into cardiac arrest through engaging gestures and comedic water balloons. “And I thought to myself, we could use street theater to engage people with parasitology,” she says. So she approached SURGE and said, “Maybe we could work together on something to do with parasites. I think we could create something really cool.”

Veitch is not alone in his thinking. A few years back, the World Health Organization published a report about the role that the arts – including theater – can play in improving our physical, social and psychological health and well-being, a particular concern in under-resourced countries.

Art activities facilitate social interaction, says Nisha Sajnani, the co-director of Jameel Arts and Health Lab at New York University, who was not involved in the sleeping sickness project. She adds that performance is just the right platform and art form to “increase a sense of self-efficacy—a sense of being able to do something about a problem.”

Veitch’s conversation with SURGE kick-started a multi-year effort for her and her colleagues in Scotland and Malawi, including an arts and theater group called Voices Malawi, which educates people about various diseases, including COVID-19 and malaria, and which uses street theater as a form of education.

First, the team had to come up with a way to portray sleeping sickness through street theatre. Musaya was excited to get involved. After studying sleeping sickness for 15 years, there was still a missing link for her – “how do we educate society not to get infected?” She hoped this theatrical foray might provide an answer.

Bwanalori Mwamlima, senior health promotion officer in the Rumphi district of Malawi, says the development of the performance was an act of co-creation among scientists, health workers, performing artists and individuals who had survived the disease. He explains that the messages they wanted to communicate were: “How is it transmitted? What are (the symptoms)? How can it be prevented? And what are the current interventions?”

Tsetse fly theater premieres in Malawi

When the show rolled out in Malawi in the fall of 2022, this is what it looked like.

Communities were told that local football and netball teams would descend on a specific pitch to play. Then, on the day of the event, the performers (a team of nurses, clinicians, students and researchers) drove through town in a truck with music blaring. It caused people to leave their homes and follow the truck to the edge of a football field. “We wanted to get a crowd together,” says Veitch.

Before the football game, they offered their theatrical vision of sleeping sickness – mainly visual with some narration. They gave red t-shirts to the audience and asked them to put them on to simulate the human bloodstream. The performers, dressed as scientists in white lab coats, waded into the crowd, each carrying a giant net. “They were supposed to be scientists looking for infection,” says Veitch.

When the crowd was sufficiently warmed up, the person dressed as the tsetse fly appeared. (The fly costume was made in Scotland by the costume designer regularly employed by SURGE. She had made outfits for “all sorts of weird and wonderful performances,” says Veitch, but this was her first tsetse fly—which had massive wings and limited vision for the person inside the fly’s head, so you “need someone to be by your side when you’re moving around.”

The fly threw beach balls into the crowd, representing the contagious parasite that the crowd was smacking around.

The bath balls were different colors, a metaphor for the way the parasite changes its outer protein coat to escape the human immune system. “It’s very difficult to create a vaccine for something that goes through this variation,” says Veitch.

People dressed as scientists ran around to catch the balls of infection in their nets. And finally, they brought out a large net, encased the giant fly, escorted it off the stage, and ended the performance. In fact, this net is highly effective in attracting tsetse flies because of its blue color and the bottle of urine-smelling liquid placed next to it. “It’s just a simple bit of material that has insecticide,” says Veitch.

But sometimes people in nearby villages remove the nets stationed in wildlife sanctuaries because they don’t know what they are or why they are there. Therefore, “one of the ideas behind the show,” says Veitch, “was to get people to really consider that they are very effective at catching tsetse. And if you leave them there, it’s beneficial for everyone, and it will prevent disease.” Furthermore, by showing scientists helping to capture the parasites, the artists hoped to demonstrate to the public that scientists and their work can be trusted.

Afterwards, the audience received further guidance during a question and answer session. They asked what distinguishes a tsetse fly from a housefly (its size, color and resting wing position), how long it takes for symptoms to appear (typically 2 to 4 weeks), and perhaps most importantly, how to avoid becoming bitten in the first place (avoid nature reserves; don’t wear blue or black, which attract the flies; wear long sleeves; apply insect repellent).

Musaya hopes the audience walked away with an improved understanding of the disease and how they would get it. “A lot of people who attended the show said they didn’t know about the disease,” says Veitch. “They had heard of tsetse but didn’t know the disease it carried and didn’t know the symptoms to look out for.”

“There is something about the dramatization of the concept that increases understanding,” she explains.

Mwamlima, who dressed up as a tsetse fly for one of the performances in Malawi, was surprised by the success of the theatrical approach, “considering that this is the first time that you bring theatrical performances to teach science,” he says. “So I wasn’t sure if it would work,” but he’s glad it did. Evaluations showed that the audience was engaged and felt comfortable asking questions. But in the long term, Veitch says they will know if the achievement was successful “if more tsetse nets are left in place and if more people come forward for diagnosis and treatment.”

Additionally, the medical professionals and researchers, many of whom had never done anything like this before, found this to be a meaningful way to connect with communities. “It really improved people’s confidence in thinking about public engagement,” says Veitch, “and they would do it again.”

“It’s a great example of how participatory theater offers a compelling, energizing, comfortable way to bring people together to clarify societal concerns, feel empowered to make a difference, solve problems,” says NYU’s Sajnani.

“I think it’s a remarkable approach,” says Kartik Sharma, the founder of the organization Public Arts Health & Us, which translates health and environmental research into film and art, including plays. He was not connected with the sleeping sickness project. Sharma argues that a performance “converts research into something that people can see and feel in a more personal way.” The result, he says, is that “you can actually use it the next day in your life. So I think it’s a very powerful strategy.”

For those who missed the show, Veitch says video footage will be used as part of Malawi’s mobile cinema program, which ranges from large televisions on the back of land rovers to large screens set up next to market places and other public assemblies. It is a common way of publicizing health notices in Malawi. The goal, Veitch says, is to “extend the legacy of what we’ve done.”

But despite all the fanfare and promise of the program, Veitch, who says she wasn’t into soccer when this program began, admits she’s still not a soccer fan.