Chagas disease, often referred to as the “silent killer,” is a unique and insidious illness that has been plaguing communities worldwide, yet it remains largely overlooked. This disease, spread by nocturnal insects, infects up to 8 million people annually, claiming the lives of 12,000 individuals on average.
Emiliana Rodriguez, a native of Bolivia, vividly remembers the night when one of her friends suddenly died on the soccer pitch. This traumatic event instilled in her a deep-seated fear of the dark and the “monster” she had been told was responsible – the Chagas parasite. “Night is when the fear generally struck,” Rodriguez recounts. “I was worried that I wouldn’t wake up from my sleep.”
Rodriguez’s personal experience with Chagas began at the age of eight, when she underwent testing in anticipation of her first pregnancy. The results revealed that she carried the Chagas gene, passing on the burden to the next generation. “I was paralyzed with shock and remembered all those stories my relatives told me about people suddenly dying,” she said. “I wondered, ‘What will happen to my baby?'”
Chagas disease is not confined to South America; it has been reported in Europe, Japan, Australia, and North America as well. The World Health Organization (WHO) estimates that between 6 and 7 million people worldwide have Chagas disease, with the majority remaining unaware of their condition. Despite these staggering numbers, Chagas has been classified as a “neglected tropical disease,” meaning it is not a priority on the global health policy agenda.
Chagas is often referred to as the “silent and silenced disease” due to its insidious nature. The initial infection can be asymptomatic, with the parasite lying dormant in the body for decades before manifesting severe gastrointestinal or cardiac complications. This long latency period, combined with the lack of awareness and understanding among healthcare providers, makes Chagas an exceptionally challenging disease to diagnose and treat.
Hernández, a mother from Mexico, experienced firsthand the challenges of navigating the healthcare system when her son was diagnosed with Chagas. “I was taken aback, terrified, and depressed because I believed my kid was going to pass away. Above all, Hernandez stated, “I was more anxious because I was unable to locate any trustworthy information.”
The lack of awareness and understanding among medical professionals is a significant barrier to early detection and effective treatment. Moreover, the impoverished communities most affected by Chagas often lack the resources and political influence to drive meaningful change in healthcare policy.
Despite the daunting challenges, there are glimmers of hope in the fight against Chagas disease. As the disease spreads to new regions, it is gaining more attention and recognition. Healthcare providers are becoming more aware of the need for early diagnosis and targeted treatment, while organizations like the Drugs for Neglected Diseases Initiative (DNDi) are working to develop new and more effective therapies.
The Chagas Hub, a UK-based facility founded by Professor David Moore, a doctor at the Hospital for Tropical Diseases in London, is on a mission to increase testing, treatment, and risk management for Chagas disease. Professor Moore’s candid assessment of the World Health Organization’s (WHO) 2030 eradication goal highlights the uphill battle, noting that progress has been “glacial” and that the 2030 target seems “improbable.”
The two medications available for Chagas disease, benznidazole and nifurtimox, have been in use for over 50 years. According to Professor Moore, these treatments are “toxic, unpleasant, and not particularly effective.” While they may be effective in curing babies, there is no guarantee that they will prevent or halt the progression of the disease in adults. Patients like Olivia Rodriguez have endured severe side effects, including dizziness, nausea, and hives, during their treatment regimens.
Moore emphasizes the crucial need for the development of stronger anti-Chagas drugs to control the disease’s spread. However, he notes that pharmaceutical companies currently lack the financial motivation to invest in such research and development. This lack of market incentive remains a significant barrier in the fight against Chagas.
Individuals affected by Chagas, such as Olivia Rodriguez and Hernández, the president of the International Federation of Associations of People Affected by Chagas condition (FINDECHAGAS), are on a mission to raise awareness and advocate for greater attention to this neglected disease. Rodriguez, through her involvement in a campaign in Spain, is determined to ensure that “Chagas is discussed and made public,” and that testing and treatment become more accessible.
In response to the growing need for action, the WHO established World Chagas Disease Day on April 14, the anniversary of the day when the disease was first discovered. This annual observance is part of the organization’s global targets for 2030, which include the prevention, control, elimination, and eradication of a diverse set of diseases, including Chagas.
To prevent potential Chagas infestations, the Centers for Disease Control and Prevention (CDC) recommends taking proactive steps, such as sealing gaps and crevices in the home, removing piles of debris, and maintaining cleanliness in outdoor pet areas. Additionally, the CDC advises against crushing any suspected kissing bugs and instead recommending that they be carefully collected and taken to a lab or health authority for identification.
Chagas disease may have long been overlooked, but a growing movement of dedicated individuals and organizations is working to change that narrative. Through the efforts of the Chagas Hub, advocates like Olivia Rodriguez and Hernández, and global initiatives like World Chagas Disease Day, progress is being made, albeit slowly. By raising awareness, driving research and development, and implementing preventive measures, the hope is that Chagas disease will no longer be a forgotten killer, but a preventable and treatable condition that can be eradicated
