diabetes supplies – The Sweet Adventurer

The first thing I noticed after we pulled into town was the smell of smog. In Bolivia, on the weather report it is common to see ‘smoke’ listed as if it were a naturally occurring phenomenon like wind or rain. But smoke has been introduced into the nation, a byproduct of mining and concrete factories and the wood people burn in their homes to combat the dusty, dry, creeping cold of the Altiplano winter, which runs June through August.

Looking up at the denuded mountains from a Bolivian tin mining village.

After we’d checked into our hotel in the city center, we rode to the clinic in an ambulance that I’m still not sure the status of. It may currently be in operation, or it may just be the finest van in town. Upon entering the building we were greeted by immediate embraces and kisses from all who had come for the focus group. The first to hug me was a woman wearing a traditional pollera skirt and whose thick, jet-black braid ran far down her strong back. She kissed me solidly on either cheek and rubbed my shoulders vigorously, her eyes glistening with emotion.

That woman was the mother of Angela (name changed), a 19 year old girl who has had Type 1 Diabetes (T1D) since she was around 14. The next day we visited the whole family in their pueblito at the base of a giant tin mine where many of the residents, including Angela’s mother, work to collect minerals from inside the mountain or from the river bed that catches the heavy-metal runoff.

Earlier in the day we had boarded a dusty microbus on the side of the road next to women selling fried breads of all varieties and hot drinks in plastic bags with red straws sticking out of the tied ends. Maria bought one of each for the road. I poured hot water into my orange backpacking mug balanced on one knee and made a cup of instant coffee to sustain me through the morning van ride. We had three home visits ahead of us, separated by miles of pockmarked and potholed roads, and coffee was non-negotiable.

Each day from my time in Bolivia could stand alone as a life-changing experience based on the stories I heard and people I connected with, but this day in particular shines bright in my memory. Maybe it was the sun rising over the arid quinoa fields at the base of the Bolivian Andes, or talking with the teenage sisters who live with Type 1 Diabetes in temporary housing with no electricity or running water. But I suspect above all it was the immense kindness and generosity we encountered from the families we visited. Not only did they share their experiences living with Type 1 Diabetes and managing it in a country where finding supplies is hard and affording them is nearly impossible, but they also filled our stomachs with homemade breads, hot drinks, and even fresh sheep milk ice cream, frozen overnight in the rafters (that was breakfast).

All this social eating was a little tricky for a gal living with Type 1 Diabetes herself, but I came to realize just how immensely blessed I am to be able to manage my blood sugar with an insulin pump and to check my blood sugar anytime I want to. I already had some idea of this, which is part of why I wanted to go on the trip in the first place. I connected with the organization ‘Life For A Child’ (LFAC) because they provide test strips and insulin to children living with Type 1 Diabetes in low-resource nations who lack access to adequate medical supplies. I was hoping my practicum could translate to a learning experience for me and an immediate benefit for others living with Type 1 Diabetes who don’t enjoy the luxuries of management that we have here. OruroOvejas My purpose on the ground in Bolivia became to interview, chat with, observe and learn from as many people living with Type 1 Diabetes or supporting those who do. Over the course of three weeks and five cities I got to do over 40 interviews and focus groups with nearly 100 participants made up of youth with T1D, their families, and the clinical staff and volunteers who support them. Everywhere I turned, a new element of life with diabetes in Bolivia jumped out at me. It became apparent that Bolivian cultural values were critical to consider when thinking about successful health outcomes for youth with T1D, especially the role of the family. One participant who volunteers as a leader for the group in Potosí and who has had T1D for 23 years himself, said that in all the situations he has observed, “La familia ha sido fundamental para poderlo apoyar..cree una necesidad, de, en todo diabético, de que la educación no sea sólo en el paciente diabético, pero sea también en su entorno. Ese apoyo a la familia, o esa educación a la familia, creo que también es muy importante, porque es un daño que afecta la familia” (“The family has been instrumental in that it can support…it creates a need, that, for all diabetics, the education not reach just the diabetic patient, but also their environment. This support for the family, or education for the family, I think it’s also really important, because it [diabetes} is an injury that affects the whole family”).

Strap on your skates and get ready for a ride round and round the insurance-supply company roller rink! It’s a place full of big ups and downs, of enthralling personal emergencies, of fantastic defeats that you have to pick yourself up from so you can try, try again, because next month, you’ll still have a chronic condition and you’ll still need those supplies, gosh darnit!

A couple weeks back I’d just walked in the door of my little sagging bungalow and was headed for the fridge to make myself a cheese plate and celebrate Friday afternoon on the porch. As I was taking the insulin for my appetizer, my pod suddenly alarmed, a long high pitched drone, that was clearly not going away. The pdm said “remove pod and call customer service.” I was very distressed to be interrupted on the way to cheese, but I called the number, because I had to. You can’t choose to do diabetes later. After a long conversation and being instructed to stick my pdm with a paper clip numerous times, it was determined that my pdm, still under warranty, would need to be replaced. The company rep was very helpful and friendly and the whole thing went pretty smoothly, considering the way it interrupted my vision of an afternoon. She asked me that thing that supply company and pump reps ask when you have diabetes and some part of their process or technology screws up, “Do you have a backup method of insulin delivery?” One time a customer service person went so far as to say to me, “I recommend that you use a backup method of insulin delivery.” Well I guess she did! Luckily I always have novolog and lantus in the fridge and plenty of syringes. The fact that anyone would present it like there was another answer besides “Of course I do!” that would work is laughable to me. But I started thinking, what if I was in the woods? On a plane? What if I had packed enough novolog and pods for any pod malfunction, but hadn’t considered that at a normal moment the whole system could crash?

It made me think too about kids with type 1 who wear systems like this, or even those who just use injections, who do not have a lot (and I mean a LOT) of parent support. The following week my saga continued. I called my pod supply company no less than 6 times, because over the course of the past three weeks I’d been waiting on pods that never arrived, and each time I spoke with someone they assured me something like, “We have to wait on approval from your doctor, they usually get back to us in two to three days.” I had to give them my endo’s number at that point, then call my doctor and confirm they received the request, then call the supply company back to notify them that the approval was in, and they still did not automatically request reauthorization from my insurance co. Every year, EVERY YEAR, my doctor and insurance company have to re-authorize that I do in fact still have Type 1 diabetes. Why would common sense and accepted medical knowledge not trump procedure here? If I am requesting pods to deliver insulin, obviously I need it. And type 1 diabetes, unless you’re in a swanky new clinical trial that I don’t know about, does not go away. We know that, or at least it’s very commonly accepted in the medical world, so can we please give those of us who live with these conditions a break and let them just manage their blood sugars and lives, instead of spend the majority of their self-care time on the phone trying to determine if their pods are on the way or if the approval has even yet been requested.

And that is all I better say about that, except that I am lucky enough to be able to take time off work to make these calls, have a cell phone with unlimited minutes, and have the awareness that you must be a strong self-advocate every step of the way. I can’t imagine what a parent would do if their child was just diagnosed with type 1 and they did not have this flexibility in their work schedule, they were trying to learn about the condition itself and navigate the slippery world of insurance policies and secure their child’s supplies each month. I don’t know how a parent of or someone with type 1 would do it if they only had a limited number of minutes on their phone or if they didn’t know that you have to have backup for your backup. Or if they didn’t have the support of family and friends with type 1 and without like I have been lucky enough to find.

Tag: diabetes supplies

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