.Chagas disease –its study and investigation– has been a significant part of my career. Despite the time that has passed, the progress made and the work conducted by numerous people and institutions, it is still evident that people infected with Trypanosoma cruzi have to go along a difficult path, full of challenges and with little support.
This happens regardless of the place where they live, either in a remote locality in Latin America, in a big city or even in countries like the United States or European ones. The burden this disease entails goes far beyond the biological aspect; it is an emotional burden that millions of people bear invisibly. Being a carrier of this disease implies walking a path marked by uncertainty, anguish and institutional neglect.
We are talking about an infectious, communicable and chronic disease. This means that it crosses all the levels of the health system: from a basic medical consultation to highly complex treatments.
The figures speak for themselves: in Latin America, more than 7 million people are infected and more than 100 million people are exposed to the vector transmitting the disease. Yet, in many countries, Chagas remains a disease that is made invisible by health systems. It is little studied, diagnosed late, and treated less than necessary.
One of the main problems is that, at its initial stage, the disease can be completely asymptomatic. It is a silent disease. You cannot feel it. You cannot see it. However, this does not mean that the disease does not progress. It does. And when it does, it can affect the heart, the digestive system and other organs, deteriorating the life quality of affected individuals.
And, most paradoxical of all, although it can remain hidden for decades, its diagnosis is simple. Merely suspecting its existence and conducting a cost-effective, low-complexity blood test suffice.
Now, it would be a mistake to believe that diagnosis solves the problem. Because that is where what I call “the loneliness of diagnosis” begins. That moment when a person, after years of unknowingly living with a parasite, finally finds out about its presence… and does not know what to do.
This moment is frequently marked by a lack of empathy, a lack of knowledge. The health personnel are not always trained to accompany the diagnosed person. So, rather than experiencing support, the patient feels a deep sense of abandonment. Without support, the diagnosed individuals feel fear and even guilt rather than accompaniment by a health system that abandons them and does not respond to their needs. Inevitable questions arise: Will symptoms appear? How will the disease progress? Can I have children without transmitting it? Is there a treatment? Will I be able to have access to the medication? Unfortunately, the answers to these questions are not always clear. And this situation generates anxiety, anguish and a sense of loneliness that patients should not experience.
In the case of infected children, we know –based on scientific evidence– that the antiparasitic treatment is very effective. It even leads serological negativization, depending on the time and the moment when the specific treatment is received. We also know that if a woman of childbearing age is treated before pregnancy, transmission of the infection to her child is practically unlikely.
Moreover, recent studies have shown that in people with chronic disease and without organ involvement, the antiparasitic treatment might modify the course of the disease.
And yet, after more than 100 years of the discovery of Chagas disease, and 55 years of having specific treatments like benznidazole or nifurtimox, we continue to discuss their usefulness. Even worse, there are people who might benefit from these treatments but they never receive them because no one offers them.
In the face of this reality, I want to express something firmly: silence is no longer an option. We have to overcome the invisibility around Chagas. Because each diagnosis is not just a number in a statistic, it is also a person, a life, and that life deserves attention, accompaniment and, above all, dignity.
We need health systems that listen, that act with empathy, that are prepared to provide a comprehensive treatment to those who live with this disease.
If the Pan American Health Organization and the World Health Organization (PAHO/WHO) have defined Chagas disease as a “forgotten disease”, then it is time to remember it, to name it and, above all, to put people at the heart of all our responses.
The path no longer needs to be a lonely one for infected people; they need to be found, diagnosed, treated and, above all, supported.