What My Son's Leishmaniasis Taught Me About Getting Sick in Ecuador

 As many of you already know, this blog has always been my space to think out loud, a place for ideas, learnings, the things that stick with me long after they happen. Today's post is more personal than usual, and harder to write. Last week my son was diagnosed with leishmaniasis, and the days that followed taught me more about our public health system than I ever wanted to learn.

For those who don't know it, leishmaniasis is a parasitic disease spread by the bite of a tiny sandfly. It's not rare here,  Ecuador has reported it for years, mostly in cases quietly absorbed by public hospitals and rarely discussed anywhere else. The World Health Organization classifies it as a “neglected tropical disease,” a category that exists specifically for illnesses that strike the world's poorest communities and never quite make it onto anyone's priority list. Somewhere between 700,000 and a million new cases appear worldwide every year, and most of them, like ours, happen far from where medicine gets developed or funded.

I didn't know any of that when the ulcer first appeared on my son's skin. What I knew was that it wasn't healing, that it was spreading, and that I needed answers fast. So, like most people would, I did what felt like the responsible thing first: I took him to a private doctor. Then, when that didn't sit right, to a second one. Between the two, we paid hundreds of dollars, and I still can't quite believe what we got for it. One prescribed the wrong medication. The other got the timing of the treatment wrong,  the kind of detail that, with an illness like this, actually matters. One of them looked me in the eye and promised he could help us get the medicine directly. He never did. No follow-up call, no medicine, nothing. Just two bills and a son who was still getting sicker while I sat there trusting that money would buy us speed and certainty. It didn't buy us either.

What followed was a week I won't forget: appointment after appointment, hospital after hospital, form after form, trying to get access to a treatment that exists, that works, but that isn't something you can simply walk into a pharmacy and buy. In Ecuador, the medication for leishmaniasis is channeled almost entirely through the public health system. If you don't go through that door, there often isn't another one, and I say that having just paid two people who were supposed to be that other door.

So we went through it. We went back and forth between clinics and hospitals, carrying paperwork from one office to another, being told to come back tomorrow, then the day after. I watched my son get seen by good, caring doctors, because he was always seen, and I want to be clear about that, but I also watched what “being seen” costs a family here. I watched other parents standing outside emergency rooms because there wasn't room for them inside, waiting for hours while people they loved cried out in pain a few meters away, unable to do anything but wait. I watched families sent out mid-treatment to buy syringes, gauze, saline, the small essential things you assume a hospital simply has, because the system that is supposed to provide them often can't.

We finally got the medication. My son is being treated now, inside the public system, and I am deeply grateful for that. I know how easily this could have gone differently. I know there are families right now still doing the paperwork we did last week, still going back and forth, still waiting outside doors we were eventually let through.

That gratitude is real, and so is the discomfort sitting right next to it. Because what this week showed me wasn't a broken system failing everyone equally, it was a system that works, eventually, if you have the time to chase it, the energy to keep showing up, and no other option but to keep pushing. And here's the part that still unsettles me: paying for private care didn't skip us past any of it. It just cost us hundreds of dollars, two wrong prescriptions, and a week we didn't have to spare, before we ended up exactly where the medicine actually was, inside the public system, standing in the same line as everyone else. For families who can't even afford to try that private door first, it's simply the paperwork, the waiting, and the medicine that already existed, out of reach a little longer than it should be.

And I keep thinking about what comes next. As deforestation and human activity keep pushing further into forests and wild land, researchers are already warning that diseases like this one, carried by insects whose habitats are shifting with the climate, won't stay contained to the regions or the case numbers we're used to. New illnesses, and more of the old ones, are going to keep finding us. If the medicine for them continues to live almost exclusively inside an underfunded public system, reachable only through hallways, forms, and waiting rooms, then “access” will keep meaning something very different depending on which door you're able to walk through.

If someone from the government ever reads this: thank you, sincerely, for the fact that my son had a door to walk through at all, and that the people behind it did their jobs with care even when the system around them made that hard. But I hope you'll also sit with the rest of what I've described, the families outside, the syringes bought at a pharmacy down the street, the days lost to paperwork while an illness spreads. Being seen, eventually, is not the same as being cared for in time. I hope we can close that gap before the next illness none of us saw coming arrives at someone else's door.

Thank you for reading, as always. This blog will keep being what it's always been, a place to think, to learn, and, this time, to remember.