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.
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.
We should always do what medical professionals tell us to do…right?
I mean, why wouldn’t we? They’ve gone through many years of extensive training. They’ve got the education and degree(s) to prove their medical expertise. So why would a patient question a doctor or a nurse when they’re telling them to do something that will improve the patient’s health?
Well, a patient might question a medical professional’s advice when it seems contrary to everything else that the patient’s been told by other, trusted members of their healthcare team.
This is exactly what happened to me when I went to see my primary care doctor a few months ago.
Actually, more specifically, I saw a nurse practitioner who works at my primary care doctor’s practice. I made an appointment with the office because I’d been experiencing some wheeziness that made me think I might have asthma that couldn’t reliably be treated with a rescue inhaler (which is all that I had) on its own. I figured it’d be smart to talk it over with my doctor, or at least someone at his practice, to see if I should start treating my symptoms with another kind of medication or therapy.
My appointment barely lasted 20 minutes. I met with a nurse practitioner who I’d never seen before. I explained how I’d been wheezing the last several days, and how it got worse when I went to lie down in bed at night. Before I could get another word out, she asked me if a rescue inhaler was all I had to use in these situations. I said yes. She proceeded to tell me that rescue inhalers aren’t designed for daily use because, as the name implies, they’re for emergency situations. Then she started telling me about a steroid that she thought I should begin to use twice daily.
I cringed at the word “steroid” because I know that they don’t interact well with my blood sugars. Steroids can make blood sugars go high rapidly, and it can take hours for blood sugar to come back down to normal levels. I told her this, and she shrugged off my concerns by telling me that the inhaled steroid would be going directly to my lungs, not my entire body like a typical steroid. I remember nodding uneasily and asking her how to use the steroid – I wasn’t going to leave the room until I had a satisfactory amount of information on this new, unfamiliar drug.
She told me I’d take it once in the morning and once at night, before brushing my teeth. Apparently, I would need to be careful and remember to rinse my mouth out with water immediately after administering the medication in order to prevent…thrush. (If you’re unfamiliar with that word, it has something to do with oral, yeast, and infection…A.K.A. something that sounds like a nightmare.) That’s when I really became alarmed. I told her that people with T1D are already more susceptible to that kind of infection, and wouldn’t it be a bad idea to even risk it by taking this steroid two times a day? And again, she essentially disregarded my protests and told me I’d be fine as long as I remembered to rinse. Then, she sent the prescription to the local pharmacy and left me in the exam room in a confused daze.
I went to pick up the prescription, but I never used it. I decided to trust my judgment and avoid a steroid that seemed like it would cause more harm than good. I also figured that since the weather had abruptly gotten cold, then perhaps my asthma symptoms would subside before long; in the meantime, I could use my rescue inhaler as necessary. And you know what?
I was right. My breathing was normal again in a matter of days, and I only had to take a few puffs from the inhaler when it was all said and done. My decision to take my health in my own hands was further validated when I went to go see my allergist soon after this ordeal. I told her all about it as we ran through the list of medications that I regularly take. She was incredulous that I was prescribed the steroid in the first place, seeing as my asthma is practically non-existent. To quote her, “You’re (meaning me) already sweet enough, you don’t need this steroid or a risk of thrush!”
That remark alone sealed it for me: I did what I thought was best because I knew I was capable of making a decision about my body; nobody knows myself better than me…even a medical professional.
27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.
I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.
It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.
With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?
One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.
So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.
27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.
When will we see change? Is it really too much to ask for insulin to be affordable to all?
One Monday per month, I’ll take a trip down memory lane and reflect on how much diabetes technology, education, and stigma has changed over the years. Remember when…
…it was a thing to mix insulin?
Yup, I’m referring to the days of cloudy and clear insulins – also known as NPH and Regular, respectively (insert corny Neil Patrick Harris joke here). Oh, you don’t know what I’m talking about? This is going back at least 15 years, probably more like 20, to when short-acting and long-acting insulins needed to be mixed in order to avoid having to take two separate shots. I only vaguely remember mixing my insulins, but here’s what sticks out in my memory about the process:
It was always “clear before cloudy” – the Regular insulin had to be drawn up in the syringe first to avoid getting any of the cloudy insulin into the clear vial.
The cloudy insulin needed to be rolled between the hands before inserting a syringe into it…I can’t remember why. Maybe to help bring it to room temperature, or make sure it was adequately mixed?
Drawing the insulins into a single syringe was nerve-wracking as hell. Precision was everything.
Air bubbles! They ruined everything!
I certainly don’t miss the tedious process of having to draw up insulin in such a careful, precise manner. If only I’d known how much easier an insulin pump would make my life sooner…
…but I guess that just makes me appreciate my pump more.