When life sent us on an unforeseeable journey, we had to decide how to respond. For us living with Type 1 Diabetes, we are choosing to do all we can to keep our girl healthy. And we are choosing advocacy. November is National Diabetes Awareness Month so here I am, advocating.
Since last August when our Love Bug was diagnosed, we have learned A LOT. MJ and I have gone through various stages of brain melt and thankfully, recovered. For the most part. :) Type 1 diabetes care is intense. Eight to 12 times a day, our lady tests her blood whether she is home, at school, out to eat, out running errands, vacationing or at events with friends. Sure, the amount of blood drawn isn’t a huge amount but it’s still blood. Seeping from of a laceration. On my daughter’s fingers. Eight to 12 times a day.
The blood strips she puts her blood on are really cool technology but aren’t cheap. I think it’s between $.40 – $.50 per strip. It doesn’t seem like a lot but it adds up. For a 90-day supply, it’s $366. Times four (for a year) is $1,464. Take that times the number of years living with it and you’ve got a sizable chunk of money. We are so blessed to have good insurance but others like our Bug don’t.
But it’s not just test strips. It’s lancets, reservoirs (pump), port setters (pump, pictured above), ketostix, glucagon, low blood-sugar savers and insulin. A 90-day supply of insulin, the drug that keeps my daughter’s body functions as best it can, costs $1,192. For a year, $4,768. I won’t go into my opinions about
the racket of pharmaceutical companies. I am again so very thankful for our health insurance. Others don’t have it.
One more bit is the pump itself. Bug and we the parents did decide to use the pump for her Type 1 Diabetes management. We have found it to be a better, easier, more effective way of managing Bug’s health. The actual cost of the pump is hovers north of $10,000. Our portion was less, yet still sizable. $5000 maybe for insurance, our out-of-pocket around $3,000 (including the deductible). The pump lasts about 4 years, after which, we will buy a new one.
On top of supplies and insurance, we, as the parents, have a constant timetable going in our head. The pump might be the closest thing to a pancreas stand-in but MJ and I are the director of that pump. Someday, as an adult, Bug will take this over. In the meantime, we keep track of:
When is the last time she tested?
When is the last time she ate?
How much did she eat?
What did she eat? Simple carb? Complex carb?
Activity level? Emotional level?
How will her activity/emotions now affect her number an hour from now? Three hours from now?
Is she growing?
Is she sick?
There is more but you get the idea.
I’m not laying it all out here to gain sympathy. I don’t want sympathy or condolences. I get to see my lively, enthusiastic, thriving daughter everyday. I get to kiss her and hold her, laugh with her, argue with her and dream about her future alongside her. She is healthy, happy and alive.
What I desire is understanding of and perspective for people living with T1D and their caretakers. For those who struggle with the financial burden of T1D, I want support in any kind that is necessary. I seek better technology, better drugs and funding for continued research for this frustrating disease.
At the end of September, the FDA approved the first artificial pancreas (worn outside the body). I could get all technical and explain an open-loop versus a closed-loop system or get all giggly dreaming about the “complex series of algorithms” it employs but I’ll summarize: it’s excellent news. Huge news. Ginormous news. We hope to get one as soon as they are available.
We are forever changed since August of last year and, if I have it my way, our family will advocate for a better future for people with Type 1 diabetes.