More than 1 billion people in developing countries are sick and require treatment for Neglected Tropical Diseases, or NTDs. These are infectious diseases that have very little attention and donor funding compared to diseases like malaria, HIV and tuberculosis. NTDs can have debilitating results such as malnutrition, blindness, weakening mental development and more. They also tend to go hand in hand with poverty, because less access to clean water and sanitation allows these diseases to thrive. One of these diseases, Chagas disease, also known as “the kissing bug disease,” exists in the areas of Brazil where poverty is prominent.
“NTDs are not prioritized in wealthier, developed countries because they do not experience the same living conditions that affected populations are in, said Jadie Moon, a representative from NGO De-Neglect. “Diseases like HIV and tuberculosis are more prevalent in developed countries and attract more attention. Additionally, the public tends to focus more on diseases that kill such as malaria. However, NTDs are more likely to disfigure and affect [the] daily lives of individuals.”
History of Chagas Disease in Brazil
Chagas disease exists in the Americas, mainly in rural areas of Latin America where poverty is prevalent. It was first reported in Brazil by Brazilian physician Carlos Chagas in 1909. A parasite called Trypanosoma cruzi, which is transferred from the waste of triatomine bugs, or kissing bugs, causes the disease. The disease can also be spread through food that has been contaminated by the bug’s feces, infected blood transfusions and organ donations. This disease affects 8 million people today, and 20,000 people die from it every year.
From 2001 to 2018, 5,184 cases of acute Chagas disease were found in Brazil. The rate of infection recorded in Brazil annually was “0.16 per 100,000 inhabitants.” Studies show a rapid increase in records of Chagas disease before 2005. Though there was a drop from 2005 to 2009, there was another increase in infections after 2009.
Symptoms and Warning Signs of Chagas Disease
Though many NTDs are not considered life-threatening, the results of Chagas disease can be. The acute phase of the disease has minor symptoms. They include fever, swelling at the infection site, rash, nausea and enlargement of the liver or spleen. These symptoms will usually go away on their own, but if left untreated the disease can advance to the chronic phase.
The chronic phase is more serious and may occur 10 to 20 years after the infection. The parasites hide in the heart and digestive muscles, leading to cardiac and digestive or neurological disorders. Chronic symptoms include an irregular heartbeat, esophagus enlargement, difficulty swallowing, an enlarged colon and heart failure.
Around 20 to 30% of individuals who are in the chronic phase of Chagas disease eventually develop clinical disease. Usually, the clinical disease that develops is cardiac. Chagas disease is often discovered in an individual years after the infection in late stages, and once established it can cause severe, even deadly cardiac and digestive disorders.
“Because of the commonly asymptomatic or mildly symptomatic acute phase of infection, Chagas disease is difficult to diagnose, and often leads to missing the best time frame of treatment,” said De-Neglect members Jesse Chen and Helen Lee.
Prevention and De-Neglecting Chagas Disease in Brazil
One of the key methods in protecting people from Chagas disease – like any other NTD – is prevention. Methods of prevention in areas that are high-risk include:
- Using bed nets that have been soaked with insecticide
- Avoid sleeping in a mud, thatch or adobe house
- Making home improvements to prevent bug infestation
- Screening pregnant mothers, blood donations and testing organ/tissue/cell donations (as an infected individual can spread the disease to a healthy individual that way)
- Washing, checking and cooking food well so there is no bug feces
One of the best ways of preventing Chagas disease in Brazil is educating the public that lives in high-risk areas. A social media concentrated NGO in California called De-Neglect has a mission of doing just that. The organization has been around since 2018, formed by a group of UC Berkeley students and alumni. De-Neglect’s mission is to raise awareness and education about NTDs like Chagas disease, and how they affect communities in poverty. De-Neglect works to accomplish this goal through research, educating the public in health and participating in “community-based mobilization.” Their members are in contact with individuals and organizations from around the world and use their media platforms to raise awareness for NTDs like Chagas that affect areas like the rural communities in Brazil.
“I know someone who passed away due to Chagas disease almost 3 years ago in Brazil,” said De-Neglect team member Paula Serpa. “It is suspected that my friend acquired the infection due to his poor living conditions and, while playing a pickup soccer game, he suffered a heart attack and passed away.”
Growing the Organization
De-Neglect Team member Jessica Tin recounts the feat it took to form De-Neglect and build their network of collaborators. They faced certain roadblocks about finding accurate and up-to-date info for some NTDs. “Recently, we reached our next milestone with the release of our “What is scabies?” video and a social media campaign for World NTD Day, said Tin. “This was our first major moment in getting our name and mission out to the NTDs community as well as to our personal circles, where most of our friends and family had never even heard of NTDs before. Seeing our impact has given us extra momentum to continue our mission by expanding our network and educating the community.”
Lessening the Impact of Chagas in the Future
“Given that NTDs are concentrated in developing, poverty-stricken countries, their management often takes up most of a person’s existing and potential wealth,” said De-Neglect Team Member Jessica Yescas. “By providing solutions, such as medication and accessibility to medical care — as well as raising awareness through education — the possibility of alleviating the perpetuation of poverty due to NTDs can become a reality.”
Those infected with Chagas disease in Brazil face additional challenges if they already struggle with poverty. If not provided reliable, affordable medication the results could cost them dearly. They can miss out on work and educational opportunities, pushing them further into poverty. Raising awareness for Chagas disease and other NTDs in areas impacted by poverty and putting them in the spotlight creates more opportunities to instill solutions, not allowing them to be neglected anymore.
– Celia Brocker