Why Waiting for Prescription Refills Feels Like a Pending Punishment

I’ve been waiting.

I’m waiting, impatiently, to learn just how much I’m going to have to pay for a 90 day supply of insulin.

I’ve been waiting for what will inevitably feel like a punishment.

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It’ll feel like a punishment because it will feel harsh and unavoidable. And it’ll be more intense than is fair because my only offense is having a pancreas that doesn’t work the way that it should.

Every time I log into the Express Scripts website, I feel a sense of dread sweep my body. I anxiously click around the portal until I get to the recent order screen (see above image). My eyes immediately flock to the blue box that will eventually display how much money I owe for my insulin.

It’s a process that reminds me of checking my grades when I was in college: After I took an exam, I’d enter my username and password into the student portal to find out whether grades were posted. I’d repeat this process multiple times a day until I found out how I scored. It was a nerve-wracking routine back then, but I wish I could tell my younger self that that was NOTHING compared to looking up the cost of my insulin.

 

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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.

Every Last Drop

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.

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27 units and no choice but to throw all of them away.

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.

Insulin keeps us alive.

Insulin is a need, not a want.

Insulin is exorbitantly expensive, so much so that it ranks #6 on a listing of the 10 most expensive liquids in the world.

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?

Happy Birthday, America!

Today is the Fourth of July! I’ll be spending the day in our nation’s capital. While I’m not entirely sure what the day will bring, I do know that I’m bound to feel a swell of patriotic pride, as I imagine the vibe of Washington, D.C. this time of year oozes red, white, and blue.

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The Stars and Stripes

As much as I love my country, I still think it has a long way to go. I promised myself I would refrain from getting overly political on my blog (for many reasons), but I will say this one thing: Many things about healthcare in America need to change. I found an article on the New York Times recently that opened my eyes to the dire state of the global insulin crisis. Here are some facts from that article:

  • One in four patients with diabetes are cutting back on insulin because of cost.
  • The typical cost of one vial of insulin is $130. One vial of insulin lasts no more than two weeks for a person with diabetes.
  • There is no generic form of insulin. This means that prices skyrocket since there is no competition among generics.

Why is this happening? Why do families find themselves being forced to choose between feeding their families or affording life-saving medication? It’s unacceptable that profits are valued over life in our great nation.

Things need to change. The politicians and policymakers who have the power to make right and just changes need to take a good, hard look at Americans who are crying out for help and struggling to simply live.

This topic is worthy of thousands more words, but I’ll leave it at that for now. Maybe it will open someone else’s eyes, too.

For now, have a beautiful Independence Day doing whatever it is that makes you feel free – and be safe!