I stayed in the house of an elderly lady named Titi who lived in the city. The first morning I was there, I sat down with Titi for some tea and she asked about what I would be doing during the week. I told her that starting Monday morning, I would be heading to La Plataforma de Chagas--one of only three clinics dedicated to Chagas in Bolivia, despite it being the country most affected by the disease--to observe patient cases. And, very casually she said, "Ah, tengo Chagas!" I was a bit shocked by how readily Titi was willing to share her diagnosis. And, she said it in a way as if it really didn't mean much to her at all. "Aquí todos tenemos Chagas, no ve?" she said as if it was something reassuring. As if having it made you normal. Luckily, Titi was a part of the 70% who remain asymptomatic for life, and she never experienced any sort of cardiac or GI complications. She only knows because she got some blood tests done when she was admitted to the hospital for a broken hip a couple years ago.
Titi decided to drive me to my first day at the clinic. Afterward, I would walk. According to the map, La Plataforma was connected to the main university, but we got lost trying to figure out exactly where it was. Titi rolled down her window and hollered at some university students who were grabbing salteñas before class.
Image: La Plataforma de Chagas. Tarija, Bolivia, July 2023
"Chico, dónde está la Plataforma de Chagas?"
"La plataforma de que?" he replied. His friends laughed. No, they didn't misunderstand her. They just had no clue what she was talking about. She asked another group of students. And another. They didn't know either.
I eventually found it just a few steps away. It was on the street side, right next to the building where students had their science classes. It then became shocking to both Titi and I that none of the students knew where it was, or even what it was, for that matter.
I walked in and met the director, Dr. Palacios, who then gave me a quick tour of the clinic and explained the basics of their system. It's a free clinic, so anyone can come. It's just a matter of getting patients to come all the way to the city for an appointment. Everyone who comes gets a teal appointment card which also has Dr. Palacio's WhatsApp number on it, just in case they have any questions at any time. There were two doctors, both men, including himself. Although, the other doctor, Dr. Luis, was quite young and only recently finished his training. There were two nurses and two lab technicians as well.
I'm not sure if he would forget, or if he was just that excited about it, or both. But, everyday when I walked into the clinic, Dr. Palacios would show me a framed collection of vinchucas that they had on the wall. "Saca una foto, saca una foto!" he urged every single morning. He really wanted my American friends back home to see what vinchucas looked like. They were a lot bigger than any bug I had ever seen; they were sure to freak out any of my American friends.
I spent the first day in the lab. It was nothing like the university lab that I work in, but it was functional and they had everything they needed: pipettes, freezers, and a hemogram. The hemogram was used to make sure that patients were not having any adverse reaction to the medication by checking their complete blood count. The lab is also responsible for officially diagnosing patients which is done by collecting a blood sample and running an ELISA to test for antibodies to Chagas; they save samples and run them all at once every two weeks to save money on materials. There are two different types of ELISA that are run; a positive diagnosis is made only if both come back positive.
Image: Real vinchucas! Tarija, Bolivia. July 2023.
For the rest of the week, I saw patients with Dr. Palacios and Dr. Luis. I immediately noticed that most of the patients were female. Dr. Palacios figures it's because women are more health conscious, and when they hear that they can pass Chagas to their "wawitas" (the Quechua word for "baby" that is widely adopted in Bolivia) during pregnancy, they typically want to do the blood test to see if they carry Chagas. Some young dads were concerned that it was their fault that their wife and baby had Chagas, but the doctors and nurses assured them that wasn't the case. There were fewer male patients, but those that came were mostly young--around twenty years old. Older men were almost always accompanied by a younger female, usually their daughter. Although, this was equally true for older patients in general, as they needed someone to help them read and sign consent forms. Most couldn't read or write.
I probably saw around 50-75 patients during my time there, none of whom I ever could forget. But, there were a couple patients that stood out to me.
One of them was what they call a cholita, a lady who dresses traditionally in a knee-length pollera skirt, a small bowler hat, and long braids. She came waddling in, followed by her daughter, who had a concerned look on her face. Immediately, I noticed her hands which she was constantly rubbing and itching. At first, I thought she was just nervous, but, at the same time, Dr. Palacios and I noticed that her hands were blotted with red dots. Dr. Palacios lifted up her sweater to listen to her lung sounds, and the rash spread all across her back.
"Ella trabaja bajo el sol," Dr. Palacios mumbled to me.
He sat back down in his chair and had to break some unfortunate news to her; she could no longer participate in the treatment.
Normally, when there's an adverse reaction, they stop the treatment for 7-10 days and then reevaluate. Changing medications isn't an option; Bolivia only has access to Benznidazole. In this case, Dr. Palacios decided to stop treatment immediately and completely. "Esta es su vida. No va a cambiar. No podemos hacer nada" he explained to me. The medication's interaction with her prolonged exposure to the sun while she worked outdoors led her to develop a severe rash. They could keep giving steroid shots to calm the inflammation, but it would only return as long as she continued to work outside--the way she's helped her family make a living since she could walk. It was then that I fully realized that the treatment of a patient is so much more than just knowing their disease and what a textbook states as the correct treatment for it; it's about understanding the nuances of their daily lives.
I was asked to call in the next patient, Daniel. "Daniel! Pase!" I called a few times but no one in the waiting room responded. I went and sat back down in my little chair in the corner of the doctor's office where I was observing. Dr. Palacios was about to have me skip over Daniel and call in the next patient, but then the door started to creak open. And then it creaked open a little more. I got up to fully open the door, looked down, and there was four-year-old, little Daniel with his parents straggling behind--mom carrying the diaper bags and dad with one baby in each arm, a set of five-month-old twin girls.
Daniel's mother found out that she had Chagas when the twins were born. But, she couldn't start treatment since she was breastfeeding. Interestingly enough, only one of the twins tested positive for Chagas. And, the babies, not affected by any acute symptoms, were still far too young to start a standard course Benznidazole treatment.
But, Daniel had just turned four--the age old enough to start treatment since he, too, was Chagas-positive.
Dr. Palacios printed out a Superman coloring page from his computer and gave him a highlighter; Daniel sat there quietly and colored perfectly in the lines, something I had never seen from anyone his age before, even in all my years volunteering at a summer art camp. He was a mature four-year-old. But, he was still just a baby. A baby having to deal with a disease that people five times his size were.
Dr. Palacios was very strict with his patients about their diet while on treatment; he demanded absolutely no fatty or starchy food so as not to further irritate the GI system, which can be quite difficult since the Bolivian diet mainly consists of potatoes, rice, and meat.
"Y el chorizito?" asked the dad, chuckling in a half-joking manner, "A Danielito le encanta."
When it came to diet, Dr. Palacios wasn't in the mood for jokes. He needed to ensure that an adverse reaction didn't occur so his patients could complete the full course of treatment.
The clinic handed out little papers with directions on how to take the medication, as well as the necessary dietary restrictions. But, it was important that dad paid attention carefully to Dr. Palacios, as the paper wouldn't serve its intended purpose for him. He couldn't read. Instead, Dr. Palacios flipped the page over, drawing little circles representing the pills as a visual reminder of how much Daniel should take in the morning and at night. Daniel would be back every week for the next two months.
After the patients left, Dr. Palacios and the nurses sat down to create a Powerpoint presentation. On Saturday, they were going to a rural community bordering Argentina to educate the locals about Chagas disease. Vinchucas aren't common in that region, but there were many immigrants from Argentina who came to this town already with Chagas disease who have not received proper diagnosis or treatment, similar to the experience of some Latin American immigrants in the United States.
That weekend, I met a couple locals who wanted to take me to try traditional food out in the countryside. We stuffed ourselves in the front of a crowded microbus and headed to San Lorenzo, a small village tucked in the Sama Mountain Range--a part of the Bolivian Andes. "Sama" in Quechua means "peaceful" and indeed it was. As we drove along bumpy and twisty roads past herds of sheep and cattle, I noticed a group of white houses in the distance. It was so beautiful it looked almost unreal--something that you would see out of a painting. The bus driver laughed as he created a ball of coca leaves on the inside of his mouth. "Sabes por qué pintan las casas de blanco?" he asked me as he chewed his coca some more, "para ver el popó de las vinchucas en las paredes!" At first I thought he was joking, considering the way he was laughing. But, he wasn't. It was entirely true. He was originally from San Lorenzo. It was really quite intelligent once I thought about it; if you can't see the vinchucas, then at least you track them by their trails.
Chagas was everywhere. Somehow, it was a part of the lives of every local I met, from Titi to the bus driver. Yet, I realized that even where Chagas is most prevalent, it's still neglected. La Plataforma made an amazing effort to recruit patients and ensure they came in for appointments. But, these patients were only people who were able to access transportation; it was at least a 20 minute car ride from el campo to the city. These were only people who had someone at home to ensure that they ate the proper diet. Or read the instructions on the medication for them. Or write a message to the doctor in case something was wrong. These were only people who were able to take off work to come to the clinic.
Chagas is still neglected, even where it gets the most attention.