Why I Hate That Health Insurance Controls My Life

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As a type 1 diabetic, I rely on health insurance to stay alive -- without it, the costs of diabetic supplies is astronomical and unsustainable.

I turned 26 in the first week of April. One of the most defining things about me is that I have had type 1 diabetes for over 20 years. And because of that, I basically need health insurance to live.

The current state of the pharmaceutical industry and all the outrage over insulin pricing hits home for me. I’m not directly affected, but I have friends with crappier insurance than mine—and I’m double-covered, at least through April 2019. Then it’s adios, dad’s insurance.

I’ve had it great for the last few years, and I fully recognize that—I took full advantage of the reduced out-of-pocket costs for insulin, test strips, pump supplies, and CGM supplies. I’ve been lucky enough to always have really good insurance, despite how frustrating it can be to deal with them.

As such, I’d like to share a few reasons why I absolutely hate that health insurance pretty much controls my life.

Non-Medical Switching

If you’ve heard this term across social media recently, good. It means that the shady practices between insurance companies and the companies they partner with are finally coming to light.

What is non-medical switching?

Say you have health insurance that you like that covers all your medications—medications that have worked for you for your entire life. Behind the scenes, your employer has negotiated a new deal with the insurance company to cut costs, and as a result, the medication you use is no longer covered at the price you’ve been paying.

So what happens?

The insurance company shrugs its shoulders and basically says “tough luck” and forces you to switch to a less-effective medication that disrupts the control you have over your condition and leaves you sicker than before.

It Can Happen to Anyone

This happened to me, twice, with different results.

When I first got my own health insurance that became primary over my dad’s, they wanted me to switch from Humalog (the insulin I’d been on for 20 years) to Novolog.

I resisted this change SO hard at first, but as part of my endocrinologist’s job, she had me test Novolog and another insulin that was covered called Apidra.

I tried Apidra first and my blood sugars were immediately terrible. Marketed as fast-acting insulin, Apidra was anything but—it took hours and hours to finally start working, and by then I’d given so much of it out of desperation for it to start working that I crashed, hard.

So I couldn’t use Apidra—for me, it was life-threatening.

Novolog, on the other hand, worked better than Humalog did. So I willingly accepted this switch.

However, when I left that job and my dad’s insurance became primary again, they didn’t want to cover the Novolog.

I resisted, again, and my endocrinologist again had me do a test with Humalog so she could send a letter of medical necessity to the insurance company saying that I could not use Humalog with the same results as Novolog—despite the insurance company insisting that they’re basically the same thing anyway.

(They’re not. All insulins work differently for everyone.)

Anyway.

Non-medical switching is a shady practice driven by costs and the bottom line, not what’s best for the patients.

As a type 1 diabetic, I rely on health insurance to stay alive -- without it, the costs of diabetic supplies is astronomical and unsustainable.

It’s Expensive

Humalog insulin didn’t exist in the market when doctors diagnosed me in 1995. It hit “shelves” a year later for $21 a vial, which was about a month’s worth of insulin for the average patient back then.

Today, it’s skyrocketed to over $300 a vial uninsured, and it’s all because of pharmaceutical greed and deals with insurance companies.

Humalog is the brand you’ve heard all over the news lately—that Eli Lilly, the manufacturer, is offering a half-price “generic logo” version.

For a three-month supply, I pay $160 regardless of how much I’m prescribed, but this still is higher than I’ve paid in the past—or what my parents have paid in the past.

Every year, premiums go up.

Every year, America shells out more and more money for health insurance.

If I ever had to buy insurance on the exchange, I’d be screwed by how prohibitively expensive it is just to pay premiums—not including a deductible and my supply cost.

Pump and CGM supplies are even more expensive because of all the medical innovation that goes into them. I understand this, but it doesn’t make it any easier to swallow.

The first shipment of pump infusion sets in January wipes out a $500 deductible in one fell swoop.

It’s Unpredictable

Year-to-year changes can be unpredictable and unreliable. Will my plan stop covering CGMs next year? Will they try to force me onto a different pump? What about the drug pricing tier—will they shake that up so my insulin is on the most expensive level?

I actually never know if and when I’ll get a bill for something. The gears of third-party medical suppliers turn slowly. My first year on my current insurance, I had to call them and force them to let me pay my deductible so I wouldn’t lose the Flexible Spending Account money I’d put aside to cover it.

They absolutely dragged their feet on things. I suspect the same thing will happen this year… it’s already April and I still haven’t “paid” my deductible.

They Don’t Get It

I remember getting on a three-way call with my mom and the insurance company when they were trying to force me off Humalog. I was so upset and dealing with a lot of other things at the same time that I knew I wouldn’t be able to articulate things.

The very idea that non-medical switching happens just goes to show that insurance companies don’t really get it.

People, generally, will take the medication that works best—not the cheapest—if they can help it. If there was an insulin brand out there that worked 100% better than Novolog but was three times the price, I’d consider it.

But when insurance companies stop covering innovative technologies like the Dexcom G6 and the Tandem pump that integrates with it… I get a ‘lil mad.

I would fight tooth and nail to keep my current set up. And I’ll do it because my devices are the best things that have ever happened in my entire diabetic life.

As a type 1 diabetic, I rely on health insurance to stay alive -- without it, the costs of diabetic supplies is astronomical and unsustainable.

Sometimes It Feels Like They Don’t Care

Beyond “not getting it,” it’s not uncommon to encounter insurance reps who don’t actually care about your issues with insurance. Sometimes they’re reading from a script. Sometimes they will need to call a supervisor because they can’t actually answer your question.

I get it.

Everyone needs to work, and telephone jobs suck. I endeavor to be calm and polite on every call I make, yet insurance is the one that frustrates me the most. It tests my patience.

The healthcare industry likes to cut costs… for them. One of the most obvious ways to cut costs is to move customer support call centers overseas.

Dexcom did this and, from what I’ve heard, significantly increased call wait times. Thankfully I haven’t had to call Dexcom that often.

Is There An Upside?

The upside to all of this frustration is that I pay relatively little to manage a very expensive disease and remain alive.

This is all “first world problems” territory, yet it’s a problem nonetheless. While I loathe non-medical switching, I probably wouldn’t have discovered that Novolog works better for me than Humalog did.

Without insurance, I couldn’t afford my state-of-the-art pump and CGM integration. I wouldn’t be experiencing the magic of Basal IQ. That means my pump automatically stops my “steady-state” insulin if the CGM predicts a low in the next 30 minutes, and I haven’t had to use my blood glucose meter since February—since the CGM is factory-calibrated and FDA approved to use for making treatment decisions.

For all the issues with American healthcare, my access to high-tech diabetes management systems is not one of them.

Call to Action

What are your health insurance horror stories? Were you forced to make a non-medical switch that negatively affected your life? Join the discussion below!

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