It’s Not Just About the Money: The Cost of Living with Diabetes

It’s November 25th which means it’s day 25 of the Happy Diabetic Challenge! Today’s prompt is about the cost of diabetes. Naturally, I started thinking about just how much diabetes costs me, not just in terms of money but also emotionally and physically…

We all know that diabetes is an expensive chronic illness.

Diabetes is associated with doctors appointments, pricey medical equipment, and maybe even the occasional trip to the hospital…all of those things aren’t cheap. My insulin alone would cost me $4,962.32 per year if I was uninsured (and if I do the math, this means that I would’ve spent over $100,000 in the past 22 years on JUST INSULIN). Those are not small sums of cash!

Diabetes hits those of us who are affected by it hard financially, but there are also significant emotional and physical costs associated with it.

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Diabetes is so greedy, and not just in terms of how much money it costs to care for it.

Emotional – Diabetes takes a toll on my mindset (un)fairly often…and it can happen so rapidly that I barely have time to process the emotions. For example, I can go from being happy-go-lucky to angry because my Dexcom alarm went off and it’s telling me that my blood sugar is high. The anger will hit me hard and I’ll spend too much time stewing over my blood sugar and the best way to correct it.

Plus, I’d be remiss not to mention diabetes burnout. It’s the feeling of total defeat, of no longer having the desire to take proper care of diabetes. It happens to the best of us, and it’s not fun to experience. But it makes sense to feel this way from time to time, because diabetes is so demanding and relentless. People with diabetes never get a break from it, so it’s no wonder that it takes a toll on emotional well-being.

Physical – Diabetes is a physically present in many ways on my body. The OmniPod insulin pump that I wear, as well as my Dexcom CGM sensor, leave the most obvious lumps and bumps underneath my clothing that often prompt unwelcome stares from strangers. And although these devices have improved my quality of life with diabetes, they’ve also undeniably altered my body image. I never had much self-confidence when it comes to that, anyways, and my devices certainly don’t improve how I feel about my own body. I know plenty of people with diabetes who can relate to that sentiment.

There are also the scars that diabetes leaves behind. My fingers are dotted by dozens of permanent black scars left from lancets pricking them multiple times per day for the last 21+ years. I sport purple circles under my eyes pretty frequently from a lack of sleep that is, more often than not, my diabetes’ fault. And sometimes, I have unsightly red marks when I remove old pods that practically look like zits and can take days to go away because the pods’ cannulas pierced sensitive spots. These are all unattractive, physical reminders of diabetes that I can’t do a damn thing about, and it’s frustrating to have even less control over how my body appears because of this stupid chronic illness.

Diabetes is a friggen’ greedy disease.

It depletes my wallet and emotional state, and it manifests itself on my body in ugly, visible markings.

It tries so hard to rob me of everything I’ve got.

But luckily, my determination to fight back harder against it is stronger than my diabetes will ever be.

Navigating Health Insurance Hell

I am one month into my new health insurance plan, and I’m more confused than ever.

I’ve sent several emails. I’ve engaged in a number of live chats. I’ve made countless calls to my insurance company, my insulin pump provider, a mail-in pharmacy service, and my CGM provider just to try and get some answers. And almost every time I hang up the phone or walk away from the chat service, I feel lost because nothing is clear to me.

Am I stupid?

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I can’t be the only one who just doesn’t get how it all works…right?

Why can’t I just get definitive answers as to how much I’ll need to pay for insulin each month?

Why does my health insurance company advertise a partnership with a mail-order pharmacy that puts a cap on insulin costs…when in reality, it doesn’t (or at least, nobody has informed me that it does)?

Why am I learning, at this stage in the game, that my prescription plan isn’t integrated with my medical plan, which means that any prescriptions I fill using the mail-order service don’t qualify towards my deductible?

Why is it all so convoluted?

As mystified as I am by all of this, I’m coping with a strategy that my parents have helped me develop, which I’ll share with you: Anyone who is going through all of this right now, or anyone who is about to go through all of this, needs to remember to be their own advocate. (I’m reminding myself to do this on the daily.) Frequently, I tell myself that I have every right to make as many phone calls or contact efforts as needed until I understand the costs associated with reordering my supplies. Although it’s easy to get frustrated when a representative on the phone speeds through an explanation or provides contradictory information, it’s important to stay focused on the task at hand.

As I continue to figure all of this out, I’m going to take note of questions that crop up and have a notepad and pen in hand any time I make a call. I’m keeping track of all messages exchanged online and I’m using the next couple of weeks as my fact-gathering stage. It’s almost like I’m assembling pieces to a puzzle…a ginormous, complicated puzzle, but one that will result in a more complete picture of the cost of my prescriptions going forward.

The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.