If I had Chagas, would I want to know?

It’s been six weeks with the study running and we have 89 patients already.  The main difficulty is finding age-matched controls, ie many 60-year olds are in the hospital with Chagas heart disease, but there aren’t many healthy 60-year olds walking around here.  The average Bolivian life expectancy is 66 years.  To think my father is already a few years older than that.

Today one of the friendliest patients came back for her results of the Chagas and diabetes (HbA1C) we ran.  Both were positive- surprises to her.  I’m not keen on breaking bad news, and I’m certainly not keen doing so in Spanish.  We were sitting on two mini stools I set up in the empty end of the hall.  She just sat there, speechless, tears welling in her eyes.  It took me a long time, but finally I just grabbed her hand and held it.  I started to offer bite-size medical advice, watching it fall on empty ears.  So instead I offered to pray together, and this she heard, as if she had been waiting the whole time for it.  So we sat outside praying in our different languages.

Our study is simply to identify a blood biomarker related to the heart disease of Chagas, which could in the future identify those at risk for cardiac complications.  We don’t do much for our current patients, but the Chagas blood test is very expensive.  Patients appreciate the opportunity to have it for free and ask to bring the whole family for it.   However with Chagas, it is unclear if people gain much from the diagnosis.  Treatment is not widely available in Bolivia, furthermore it’s unknown if treatment actually benefits adults (a large 5-year study is underway now). 

Will knowing she has Chagas help her?   Maybe she will go to the doctor sooner if she has symptoms, and start heart failure medication earlier if need be.  Or maybe when Chagas meds are available here she can take them, and they may prove helpful.  But maybe this diagnosis will linger over her head for years.  I pray it’s not that last one.