3 Things I Want the World to Know About Insulin

See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.

Ethan Zohn_ A Survivor Contestant Who Inspires-2

  1. Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
  2. Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
  3. Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.

So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.

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.

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.

Spare a Rose this Valentine’s Day

So Valentine’s Day is tomorrow. Perhaps you loathe the holiday of love and celebrate it solo, or choose to use the day to express your gratitude for your close friends, in the style of Parks and Recreation’s invented holiday, Galentine’s Day.

If you’re in a relationship, you might have an extravagant, candle-lit, five-course dinner planned with your loved one. Or maybe you’ll keep it a bit more simple and say “I love you” to your sweetheart, with a thoughtful card, box of chocolates, and a dozen roses in hand.

Whether or not your scenario includes a dozen roses, though, consider this:

What if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?

I bet you wouldn’t mind getting one less rose in that case.

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This Valentine’s Day, please consider sparing a rose as part of your celebrations. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.

Spare a rose and save child this Valentine’s Day.

Why I’m Afraid to Turn 26

I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?

But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.

to my best buddy,
I don’t want a cake or presents for my birthday this year. I’d rather affordable health insurance.

This is terrifying to me. Why?

I’ve heard the stories.

Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.

He passed away just one month after going off his mother’s health insurance plan.

His family believes he was rationing insulin in order to survive until he could afford to buy some more.

There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.

I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?

One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.

And that is the simple truth of why I’m afraid to turn 26 this year.

Leadership in the T1D Community

This blog post is a response to a prompt provided by my friends at the College Diabetes Network, who are celebrating College Diabetes Week from November 12-16. Even though I’m no longer in college, I like to participate in CDW activities as much as possible to show my support for the CDN!

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Recently, I’ve asked myself, “Am I doing enough?”

I want to make meaningful contributions to the diabetes community. I think that I make a slight ripple by writing this blog, but to me, a ripple isn’t enough. I want to do more.

That’s why I want to put more effort into seeking additional advocacy opportunities. I haven’t defined those yet, but I know that there has to be more ways in which I can make my voice heard in a way that has a greater impact. Perhaps I can do more to further the #Insulin4All initiative, which, if you’re unfamiliar with, is explained on the Insulin Nation site in the following terms:

T1International is a global nonprofit that works to improve life-saving access to insulin, supplies, and healthcare for individuals with Type 1 diabetes around the world. Their mission is to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. The organization helped to launch the #insulin4all hashtag and campaign, which has recently gained a lot of traction in the United States, where diabetes costs have grown especially exorbitant. Note: T1International is not limited to #insulin4all and vice versa, although both are discussed here.

I admit that it’s an effort that I’m only vaguely acquainted with, and I’d like to change that because it’s massively important. It goes without saying, but diabetes is difficult enough. Anyone who lives with it or cares for someone with it should be able to afford the insulin they need to survive, or to help a loved one survive.

If you’re someone who’s worked on this campaign, or if you know a way that I can step up and do more as a leader in the T1D community, please feel free to let me know. We’re in this together, and the more people we’ve got chipping in on various efforts, the more impact we’ll make.

Spare a Rose this Valentine’s Day

Happy Valentine’s Day, readers. Whether you celebrate the holiday or not, I’d like to make you think about a dozen roses today.

A dozen roses is a classic Valentine’s gift, right? But what if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?

I bet you wouldn’t mind getting one less rose in that case.

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This Valentine’s Day, please consider sparing a rose. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.

Spare a rose and save child this Valentine’s Day.