A 'Caffeinated Diabetes Pirate' Addresses the Insulin Pricing Crisis

Naturally, patient advocates come in all shapes and sizes -- and with all manner of fascinating personal interests. Today we're happy to host longtime type 1 Scott Mullins in North Carolina, who fancies himself a pirate and jack of all trades.  

Diagnosed as a baby back in November 1983, the now 35-year-old married father of three and coffee fanatic tells a great tale of his medical woes that includes a sponge pancreas, Dr. Langerhans (who discovered the cells that secrete insulin), video game production, and even a multi-tentacled healthcare monster that's after our wallets.

So grab your cup of java or whatever you may prefer, and sink into Scott's quirky POV here at the 'Mine today.

A Tale of Coffee, Odd Jobs and Chasing Insulin - by Scott Mullins

Clearly I enjoy a good pirate theme. But let's start with the obvious: Why is my online name Caffeinated Diabetic?

Well, a phrase of mine is that I survive on insulin and coffee. At this point I'm not sure which one is more important to me. 

It’s pretty much an understatement to say I enjoy drinking coffee. You can follow my caffeinated posts about my life, diabetes, and coffee consumption on Instagram (@CaffeinatedDiabetic) or Twitter (@DiabeticBarista).

This next month marks my 34th year with type 1, after being diagnosed at age 1.

Professionally, I've worked in a few areas of interest to me -- from diabetes, gaming, and yes, coffee. I majored in business management in college, before switching to the software side of things and taking Microsoft certification courses. Then I tried video game development several years back, but never finished the degree. So, you might say I am more a "jack of all trades," or maybe a "Master of Coffee" since I am a "Coffee Master"? :)

I ran a video game blog for several years that really got me started and allowed me to practice photo editing and some video editing, and I just kept doing those things after I stopped writing on the site. The site was called CoffeeWithGames.com, and it wasn't the typical video game review and video game news site; it was more data-based. I would show how many hours certain Nintendo Wii games were being reportedly played, record data for the games every week when it was available, and do occasional interviews for the site.

As of writing this, I work at Starbucks during the days and I just hit three years at that job on National Coffee Day Sept. 29. I attempt to work on other projects at night, and one side project I've been working on slowly but surely, is actually video game-related, while the other project is coffee-related (surprise!).

So as you can see, coffee and diabetes are two big themes in life for me. To my family and friends in real life, I'm just Scott -- though we often joke that if I were a pirate, they'd be my pirate crew helping me sail the highs and lows of the diabetes seas.

My Diabetes Story

My diagnosis came in November 1983 as a one-year-old. My mom said my blood sugar was somewhere near 800 when I was rushed to hospital, and it was probably a blessing in disguise that I had gotten strep throat before my diagnosis. That apparently caused me to lose my appetite and stop eating, which probably helped keep my blood sugar from going even higher, but that's just a guess on my part.

I was in the hospital for about two weeks, while they figured out how much insulin would work for me, and my mom learned how to do my shots and check my blood sugar, what I should eat, when I should eat, and all those things. After being rushed to the hospital when I was diagnosed, I've fortunately never had to go back to the hospital because of my diabetes.

My parents did their best to raise me as normally as they could and they never let diabetes stop me from doing much of anything that I wanted to do. They did a great job at helping me accept it for the craziness that it is. I played basically every sport when I was little and in high school I did power-lifting for three years.

Highs and Lows Growing Up

For me, the memory of first using test strips involved holding the side of the strip container and comparing the color of the strip with the color range on the vial to see which "range" my blood sugar was in. My blood sugar readings were written down. I went to a diabetes camp for a week one summer, I think it was the Louisiana Lions Camp, where I remember learning to do my own shots, and getting into a pillow fight.

In junior high, I did my science project on diabetes, dressing up as Dr. Paul Langerhans and crafting a pancreas model out of a sponge and tubing for the blood vessels and other parts. I still have the sponge pancreas, and I'm sure there's a picture of me out there somewhere dressed up as Langerhans!

One way I've tried to stay on top of my diabetes throughout the years is by checking my blood sugar often. Very often. My endocrinologist told me several years ago something like, "You may be the only type 1 diabetic I have told that you check your blood sugar too much." My A1C at that appointment came back in the 5s, and she never said anything after that about how much I check. :)

I was on multiple daily injections (MDI) from 1983 until about 2002, and used insulin pumps until 2016, when I ended my run with the Animas Vibe and switched back to MDI by accident when I ran out of pump supplies one weekend due to a bad infusion site.

Fortunately, I had some NPH (N) insulin from Walmart that had been sitting in the fridge for two months, and that was the first time I'd purchased any long-acting older insulin since I'd changed to pumping 14 years earlier. Kind of crazy how it worked out. It's been a nutty year navigating this new MDI routine, and there have been some big lows thanks to going through five different types of insulins -- Lantus, Humalog, Novolog, N, and R -- all because of costs and insurance plan changes.

Insurance "Coverage"?

Speaking of the costs associated with T1D, "health insurance" and insulin costs I think are areas that need to really be addressed! This is what led me back to MDI, unwittingly.

A year ago, I had switched my insurance plan to one that had a super-high deductible, because of how much the premium was increasing on the old plan. Due to this insurance change, my prescribed insulins were going to be over $300 per vial (!), until I met the deductible. Meeting the deductible would have taken me almost an entire year. This exorbitant deductible made my health insurance basically useless to me as a type 1.

I made the decision to switch to N and R insulins when my other insulins ran out, because of the costs of the other insulins on my useless insurance plan. The first day I used both N and R for the first time again was on Feb. 8, 2017 -- probably close to 20 years since the last time I'd done that.

I had heard about the lower costs of N and R from fellow PWDs online, and I'm glad that I had heard about it from them when I did, which was prior to my insulin pump supply issue and prior to my insurance plan changing for the worst last year.

N and R are definitely not the best or fastest-acting insulins on the market, but they do lower my blood sugars and have helped me survive the last year with a junk insurance plan.

I've had others ask me about my use of N and R over the last several months, and even though those insulins are available without a prescription in many states and at a great price, it's not a change you should make without talking to your doctor.

As noted, these insulins are definitely not the best on the market; they're 30+ years old now. But I do hope everyone with diabetes who faces dire straights with insulin prices knows that these insulins are currently available as options, and that they can talk with their doctor about them.

Unfortunately, we know of at least two fellow T1s who've passed away in recent years, in some part due to their health insurance plans changing, and the costs of their prescribed insulins being more than they could afford. If I hadn't seen fellow T1Ds online talking about the availability of older low-cost insulins, I wouldn't have known where to turn.

The fact I am even having to mention and use these N and R brands in 2017 is crazy to me.

What good is health "insurance" that you can afford, if it doesn't cover the medicines you need and are prescribed? What good are newer, better insulins, if patients can't afford them? Why is it 2017 and I'm using the same insulins to treat my diabetes that my parents were buying for me in the 1980s?

I think the United States is the last major profit haven for the publicly traded companies in the healthcare industry. Until the market either collapses or a new competitor can somehow get into the insulin market, I think we are stuck with the ridiculously priced better insulins, as well as the ridiculously priced health insurance plans to "cover" them.

I don't see any easy solutions to the insulin pricing issues PWDs are facing in the United States. That's because we are dealing with a multi-tentacled profit monster on the healthcare and insulin pricing front, with each tentacle attached to our wallets. The monster protects itself, at our expense.

Possible Solutions?

One solution that I think would work, and that I hope happens quickly for us, would be a company and/or insulin philanthropist entering the insulin manufacturing market, and causing market disruption in the United States. A company that is looking to make profits, sure, but one that is not publicly traded would be ideal. Finding an "insulin philanthropist" to help open an insulin manufacturing company to provide the better types of insulins at lower costs would be great.

Short of that, I would settle for someone becoming like Drs. Banting and Best and finding the "next great discovery" for us (see: CURE!).

I'm not even sure how this pricing crisis got so acute... maybe the Powers That Be thought we could treat ourselves with cinnamon? Or maybe they thought we really could survive on just coffee? Of course I'm all for coffee and cinnamon, but even I (with my pirate's resolve) can't survive on those alone.

No, I don't know what the answers are, but I’m open to discussing anything that might constitute a real solution to the problems we face. I think it's important for us patient/advocates to keep an open mind and be willing to consider numerous options. Whatever the possible solutions may be, stay caffeinated, My Friends!

May we also say... 'AAAARRRGGG' as to insulin pricing? Thank you for sharing your concerns and adventuresome spirit with us, Scott!

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Originally published at DiabetesMine on Oct. 2, 2017