The Patient and Me: T1D in Guatemala

7/9/18
WRITTEN BY: Jordan Hoese
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We sat in a dusty, unairconditioned room in the mountains of rural Guatemala as I explained to this 22-year old new father that he had Type 1 diabetes. Six months ago, his own father had traveled hours to get him to a hospital in the capital, where doctors had diagnosed this skeletal young man with Type 2 diabetes, prescribed metformin, and sent him home. He continued to get sicker and sicker as his beta cells failed and his body struggled for fuel.

I had heard from local doctors that it wasn’t uncommon for people in this poor and remote area of the country to die from noncommunicable diseases without ever knowing what was happening to them. Dr. Castillo, a Guatemalan-born, -raised, and -trained physician, had rotated in this part of the country during medical school, and upon graduating moved to this rural community and founded this small hospital to do what he could for the people he felt needed his care the most. Refuge International, the organization I was there working with as a first year medical student on break from class, had been making regular trips to help provide manpower, supplies and medications to Dr. Castillo since meeting him and hearing his story years ago.

When our newly-diagnosed T1D patient showed up at the clinic, the other medical student who had been seeing him ran across the tiny hospital compound to come find me, where I was helping prep patients for surgery that day. We were a staff of ten medical students, three doctors, two surgeons, a PA, and a nutrition student, and while one of the doctors was a general pediatrician who was able to calculate insulin doses and treat DKA, I was the only one with the experience necessary to do new patient education for Type 1 diabetes.

As I entered the room, she and the supervising pediatrician sat back as I explained through a local translator what this new diagnosis would mean. At the time, I spoke and understood just enough Spanish to know that Daryl, my friend who happened to be assigned to that room, did a beautiful and compassionate job translating my words to act as the immediate healthcare provider to this man and his family. His role in this story and the rapport he built with our patient cannot be overstated.

“It’s going to be okay,” I said. “I have it, too. I’ve had it for years.” Our patient’s father burst into tears, and our patient smiled at me, relieved. I didn’t look ill, and was clearly healthy enough to work in medicine and travel internationally. Through his tears, his father told me that for the past six months, he thought he was watching his son die. Knowing that I was okay meant his son would be, too. I knew firsthand how important it would be for our patient to have a positive and encouraging diagnosis experience, so I smiled and reassured him that with the right amount of insulin, he would live a long and healthy life. Just like me.

But we didn’t have any insulin in our pharmacy. People don’t really donate insulin to nonprofit organizations, and even if they did we didn’t have a way to transport and store it. Asking around, we found out that the nearest pharmacy that might possibly carry some was an hour away over unpaved mountain roads by truck. We were told that a bottle of 70/30 ran about US $30 a bottle, a month’s salary for our patient, who had a wife and two young children, including a brand new baby, at home. Dr. P, the pediatrician, took the money from her own wallet, and handed it to the father, telling him to find a friend with a truck.

In the meantime, we admitted our patient for IV fluids, which is always the first step in treating new-onset T1D or DKA, anyway, even before insulin. His blood sugar fell from “HI” to the 500s. While we waited for his father to return, we scrounged around the hospital for a spare glucometer and some lancets we could give our patient to take home. We found them, but no lancing device. Our patient would have to prick his finger with the lancet alone (much more scary and painful) until he could get back to a pharmacy.

Six hours later, his father returned. The nearest pharmacy didn’t have it, so they had to travel all the way to the nearest city of San Antonio Suchitepéquez before they found a bottle to buy. The packaging was dirty and banged up, and it was 70/30, but it was insulin. We gave our patient his first shot that night, and watched the glucometer as his blood sugar approached the 200s.

All week, we sat on his bed in the one-room hospital as I showed him how to use a lancet sugars on my own fingers, taught him to pinch his skin to trick his brain into ignoring painful injections, used my own shaking hands to teach him how to watch for lows. I encouraged him, wanting to empower him to take ownership over this disease, and take ownership he did. He (and his amazing and supportive wife!) took to diabetes management like a fish to water, quickly learning how to count carbs, to stick with his meal plan, check his blood sugar and inject a medication that was expensive, barely accessible, and required careful storage at cool temperatures.

As the week went on, I never showed him my expensive insulin pump, or told him how the pharmacy five minutes from my house is never out of stock, how my power never goes out and my fridge is always cold. I was painfully aware that our shared disease was a huge driver in his and his family’s positive outlook towards his diagnosis. And knowing how crucial those attitudes and experiences at diagnosis are in determining your relationship with the disease moving forward, and by extension the quality of your life, I didn’t want to take that away. I didn’t want him to know how different our diagnosis stories, our treatment plans and ultimately our lives were.

It’s really easy to do Global Health wrong, to fall into the White Savior Complex of thinking that people in other situations need your help in ways that they don’t, or that by default anything you do for someone with limited resources will ultimately have a positive impact. Witnessing these misled attitudes and their impacts while abroad is what compelled me to earn a Master’s in Public Health with a Focus in Global Health while I was in medical school, learning how to avoid these pitfalls and create sustainable healthcare solutions for low-resource communities. I chose to work with Refuge International because they have the buy-in of the local community, and their hospital and clinics are constantly staffed with local, culturally competent healthcare professionals who will be there to do the hard part when we leave.

But regardless of the setting, there will always be ethical dilemmas. And honestly, this entire experience still kind of keeps me up at night because it hit so close to home. Should I have shared my own insulin? Should we have given him the $30? Should I have told him about my insulin pump? Where is the line between doing what’s right in the moment and what’s right in the long-term? Did my decisions make a real positive impact or did they just make me feel better?

When we left, Dr. P pressed $70, salary for two months work, and only enough for two vials of insulin, into our patients hands. Dr. Castillo would still be there, as always, when he returned for his follow-up appointment in a week, and I feel confident knowing that we didn’t leave a bigger gap than we filled in that regard. But with a family to support, and the region’s agricultural economy still recovering from a fungus that had wiped out the crops a few years ago, how was he going to afford insulin, test strips, syringes? And if he could afford them, how would he reach them? There was no sustainable solution that I could see.

That same week, we had another patient. He was 10 years old, visibly puffy from nephropathy, in constant pain from neuropathy, and losing his vision from retinopathy. His mother had brought him to clinic solely to get a doctor’s note allowing him to sit closer to the board at school. Their family was poor even by local standards, and over the past several years, this mother often had to choose between buying insulin for her son and feeding her family. I feared a similar future for my other patient to whom I had unintentionally promised so much just by being in his presence as someone in the same situation, who happened to be born only 1,000 miles north.

We admitted this boy for stabilization, introduced him to the low-carb panacea that is peanut butter, and got him the accommodations he needed at school. Dr. Castillo even began talks with the principal to get the school to subsidize his insulin. It was probably too little, and definitely too late, but it was a sustainable solution.

I don’t have a clean ending for this story, because there is no clean ending. I think about these patients all the time. I don’t know what happened to them. I know Dr. Castillo is still there, doing the absolute most he can for them, and I know I could reach out and ask him how they’re doing. But part of me, the part that has seen these same situations play out too many times in low-resource settings in the U.S. alone, already knows.


Read more on access issues and managing Type 1.



Jordan Hoese

Jordan Hoese, age 25, has had T1D since 2005. She has a Master of Public Health, focus in Global Health, and is currently in her fourth and final year of medical school. After medical school she plans to train in and eventually practice Family Medicine in resource-limited community settings. She ran her sixth marathon last year on team Beyond Type Run, and is the Type One Run Dallas Chapter Leader! Her hobbies include running, travel, hiking, camping, yoga, healthy eats, coffee and hanging out at home with her boyfriend and three cats.