As a young child, Emiliana Rodríguez’s early memories involve watching her friends engage in a nocturnal game of soccer. However, one fateful night, the game was marred by tragedy as a player suddenly collapsed on the field. Unaware of the cause at that time, Rodríguez, who was born in Bolivia, developed a deep fear of the night, haunted by the specter of Chagas – an insidious and elusive ailment referred to as the “monster,” rumored to emerge only under cover of darkness.
Chagas, an enigmatic affliction transmitted by nocturnal insects, silently afflicts up to 8 million individuals annually. Rodríguez’s friend became one of the unfortunate 12,000 victims claimed by this malady each year. Having relocated to Barcelona from Bolivia 27 years ago, 42-year-old Emiliana Rodríguez found herself unable to escape the clutches of Chagas, the “monster” that had cast a long shadow over her life.
“The fear usually came at night. Sometimes I couldn’t sleep,” she recounted. “I dreaded the idea of falling asleep and never waking up.” Eight years ago, while pregnant with her first child, Rodríguez underwent tests that unveiled her status as a carrier of Chagas. Paralyzed by shock, she was reminded of the tales spun by her relatives about sudden and mysterious deaths. Her friend’s tragic demise also echoed in her mind. “I wondered, ‘What will become of my baby?'” she pondered. However, Rodríguez bravely pursued treatment to safeguard her unborn child from vertical transmission of the parasite. Upon the birth of her daughter, the tests yielded a negative result.
In a parallel narrative, Elvira Idalia Hernández Cuevas of Mexico had no prior acquaintance with Chagas until her 18-year-old daughter faced a grim diagnosis.
Idalia, at the tender age of 18, was donating blood in her hometown near Veracruz, Mexico, when her sample revealed a positive Chagas diagnosis. This ailment, stemming from bloodsucking parasites known as triatomine bugs or “kissing” bugs, was a stranger to her until then. “Chagas was an unfamiliar term to me, so I turned to the internet for research,” Hernández recounted in an interview with The Guardian. The revelation that Chagas was dubbed a “silent killer” struck her with terror and left her grappling with uncertainty about the right course of action.
She wasn’t alone; a significant portion of the populace remained unaware of this vector-borne disease propagated by these troublesome pests.
Named after Brazilian physician and researcher Carlos Ribeiro Justiniano Chagas, who first identified a human case in 1909, Chagas disease has established its presence across Latin America, North America, Europe, Japan, and Australia over recent decades. Kissing bugs, primarily dwelling within the walls of modest, low-income housing in rural or suburban regions, exhibit heightened activity during the night when individuals are at rest. The bug transmits the T. cruzi infection by biting and subsequently defecating on the host’s skin. The unsuspecting victim may inadvertently scratch the affected area, allowing the parasite’s entry, or unknowingly spread the feces to their eyes or mouth.
Statistics from the Centers for Disease Control and Prevention (CDC) indicate that approximately 8 million people in Mexico, Central America, and South America – amounting to 6 to 7 million globally, according to the World Health Organization (WHO) – suffer from Chagas disease, with the majority oblivious to their condition. Left untreated, this lifelong infection can be fatal, claiming around 12,000 lives annually – surpassing the toll of any other parasite-related ailment in Latin America, including malaria, as reported by The Guardian.
While these bugs have been identified in the U.S., affecting nearly 300,000 people, it has not reached an endemic status.
Although some individuals may remain asymptomatic, the CDC notes that after decades, 20 to 30% of patients may experience cardiac or gastrointestinal complications, with potentially fatal outcomes. Alas, the global case detection rate languishes at a mere 10%, exacerbating the challenges of treatment and prevention. Seeking guidance, Hernández and her daughter embarked on a quest for medical help, only to find that most healthcare practitioners possessed limited knowledge about Chagas and its treatment. Hernández shared her dismay, “I was taken aback, frightened, and sorrowful, fearing that my daughter’s life was in jeopardy. More distressingly, I struggled to access reliable information, deepening my anxiety.”
Ultimately, familial assistance stemming from a healthcare professional led to the necessary treatment for Idalia.
“In Mexico, the authorities suggest that Chagas has a minimal impact and is under control. However, this does not reflect the reality,” Hernández asserted. “Medical experts receive inadequate training and often mistake Chagas for other cardiac conditions. The prevailing unawareness of Chagas’s existence in Mexico is alarming.”
Chagas holds a place on the World Health Organization’s list of neglected tropical diseases, indicating insufficient attention from the global health policy agenda. Colin Forsyth, a research manager at the Drugs for Neglected Diseases Initiative (DNDi), elucidated that Chagas falls victim to neglect partly due to its concealed nature, remaining latent within the body for an extended period. He emphasized the compounding effect of societal and biological factors that obscure its visibility.
As Chagas expands its footprint to other continents, awareness of its existence grows. It is now known that the disease can be transmitted through blood transfusions, organ transplants, and from mother to child during pregnancy or childbirth.
Professor David Moore, a consultant at the Hospital for Tropical Diseases in London, established the Chagas Hub in the UK, with a primary aim of increasing testing and treatment rates while managing transmission risks, particularly from mother to child. Moore acknowledged the sluggish pace of progress in Chagas elimination and expressed skepticism about achieving WHO’s 2030 target for eradication. He remarked, “I find it difficult to imagine that we will be anywhere near achieving that goal by 2030. It appears highly improbable.”
The treatment of Chagas involves two medications, benznidazole and nifurtimox, both of which have been on the market for over half a century. Moore characterized these medications as “toxic, unpleasant, and relatively ineffective.” While these drugs may effectively treat infants, their efficacy in halting disease progression or preventing it in adults remains uncertain. Rodríguez, for instance, recalls enduring severe side effects, including hives, dizziness, and nausea, during her treatment. She persevered through the regimen and continues to undergo annual check-ups.
Moore underscored the imperative for more effective Chagas medication to curb its spread. However, pharmaceutical companies currently lack financial incentives to invest in research and development for such treatments.
In the interim, Hernández has assumed the role of president of the International Federation of Associations of People Affected by Chagas Disease (FINDECHAGAS), driven by a mission to amplify awareness of the silent disease.
Meanwhile, Rodríguez, now residing in Spain, wages her battle against the “monster” by spearheading a Chagas awareness campaign through the Barcelona Institute for Global Health. “I’ve grown weary of the pervasive silence,” Rodríguez declared. “My aspiration is for Chagas to become a topic of discussion, for people to be informed about it, and for individuals to seek testing and treatment.” World Chagas Disease Day, established by the WHO on April 14th.
