Well, today is my 26th birthday. As I alluded to a few months ago in another blog post, I’ve pretty much been dreading this particular birthday.
Today’s the day I’ve got to switch health insurance carriers. I’m going off my parents’ plan and signing up for the employee plan offered by my company.
Am I nervous? Yes. Am I scared? Hell yes. But am I alone? Hell, no. I’m lucky enough to be able to say that I’ve got so many resources in my life – family, friends, the DOC – who will help me navigate the confusing world of health insurance.
I’m also well aware that many, many other T1Ds have been in this position before me. While it’s impossible to forget the horror stories about people who have been unable to afford their medication due to a lack of insurance coverage, or who have a hard time paying for insulin and other diabetes supplies in spite of having health insurance, there’s so many more people who have found ways to make it work without having to sacrifice their health or general well-being.
So I’m going to focus on how blessed I am to have resources all around me, as well as a job that offers decent health insurance (or just a job, period…there’s plenty of jobless people out there who have double the hurdles to jump over compared to someone like me). Today, I won’t dwell on my fears and anxieties about health insurance. Instead, I’ll celebrate another year of life and enjoy the day.
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?
There’s lots of different “kinds” of high blood sugar. There is the type that is self-inflicted due to inaccurate carb counting or insulin dosing. There’s the sort that can be blamed on technological error – an insulin pump failure or a cannula kink, for instance. And another kind is linked to illness, when a cold or other sickness prevents insulin from working efficiently, thereby stopping blood sugars from coming down to normal levels.
And then there’s the type of high blood sugar that simply can’t be explained. It’s high for seemingly no goddamn reason, and it’s the most frustrating high of them all.
That kind of high is also the kind that takes what feels like forever to come down.
I experienced this after a Saturday of travel earlier this month. I’m fairly accustomed to traveling, especially if it’s a quick trip on a plane or just a few short hours in the car. I say this because I’m almost positive that my hours-long high blood sugar had nothing to do with my travel day…although when it comes to diabetes, nothing can truly be ruled out.
Anyways, I digress. That day involved me heading out of the house at 10 A.M. I drove to the shuttle that would take me to the airport. I got to the airport about an hour before my flight was due to take off. I went through TSA Pre-Check – my first time using the service, which I totally recommend – without any issues. I had enough time to pick up some food for a small lunch, but when I checked my CGM and noticed that my blood sugars were hovering in the 200s, I decided to deliberately pick lower-carb snacks to munch on in lieu of a real lunch. Turkey jerkey and cheddar popcorn weren’t the most filling snacks, but it was something.
I figured that by the time I got on the plane, my blood sugars would be stabilizing. No such luck. I was still in the low 200s. I took one or two more boluses during my quick hour-and-a-half long flight, thinking that I must be heading for a blood sugar crash by the time I deplaned. Nope. I was still running high, even by the time I met my partner by the baggage claim. I raised my temp basal and kept my fingers crossed that by the time we reached the restaurant we were bound for, I’d be coasting down. As we got settled at our table, I checked my blood sugar and felt slightly relieved to see that I was 183. At least I was finally below 200.
I pushed blood sugar worries out of my mind for the next hour or so. I just wanted to enjoy my meal and my time with my significant other. But as we finished eating and made our back to the car, I couldn’t help but notice the repeated buzzing coming from my CGM. I was rising gradually, well on my way to 300. I tried to not panic and gave myself more insulin. We arrived home and the vicious cycle truly began. For the next three or four hours, I tested and corrected every hour, on the hour. Midway through that interval of time, I changed my pod – perhaps it stopped working properly – and prayed that the new pod would finally bring me back down.
And, spoiler alert: It eventually did. But in the agonizingly long hours I had to wait before my blood sugar was down…I experienced a bevy of emotions. I was mad. I was upset. At one point, I was very technical and rational, going through my next steps both in my head and out loud to my worried partner. He asked me what we should do in the event that my blood sugar was still elevated after a certain length of time, and that’s when I started crying tears of fear and frustration. It all felt so unfair. I was doing all the right things and it wasn’t make a difference. That was a hard reality to swallow. And I couldn’t help but cry harder when he asked me to show him how to use glucagon again (it’s been at least 3 years since he had formal training with my diabetes educator). Part of me felt better, knowing that he was prepared for adverse affects of taking so much insulin to combat a high, but I think I was more focused on and distraught by the fact that he might need to intervene, which was an especially upsetting scenario because I never want to put that responsibility on anyone.
Once I calmed down, I filled a water glass, sat down on the couch, and texted my mother, who is always my T1D sounding board. She reassured me that I was doing the right things, and that I should continue to wait and see what happened. She also advised me that I should be prepared for a crash, because sometimes, it seems like all the insulin kicks in at once when blood sugar drops too quickly/low from a high.
So I waited. I drank water. I showed my boyfriend the app on my phone that simulates glucagon injections – just in case. I played video games. I tried to keep my cool. Before long, it was nearing midnight, and I desperately wanted to curl up in bed. I went through my pre-bed routine, washing my face and brushing my teeth, knowing I’d check my blood sugar for the umpteenth time that night once I was done.
And…it was 153. Better yet, it didn’t go as low as it could have overnight: I dropped to about 75 by 8:30 A.M. All things considered, it was a decent outcome.
The hellacious, headstrong high had finally subsided. I was so, incredibly relieved. And I’m so, incredibly hopeful that I don’t experience a day like that again any time soon.
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.
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.
One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…
…the insulin vial that my mother and I accidentally broke in the bathroom of a restaurant, many years ago. R.I.P., tiny vial of Humalog.
This goes back to the days of having to scurry off to the restroom soon after ordering our meals to check blood sugars and inject insulin. And it was a pain. We wanted to be considerate of other diners around us in the restaurant, so doing our diabetes things at the table wasn’t an option. That left us with the most logical choice, the bathroom.
On the night of the broken vial, we were having dinner at a local restaurant. Once our dinner orders were placed, we headed off to complete our routine. And it went just as expected: We knew our blood sugar levels and did the mental math necessary for figuring out our insulin intakes. If memory serves correctly, I was still at an age where I wasn’t totally comfortable with injecting myself yet and would ask my parents to help me whenever we were in a public place (I felt better about self-injecting at home, my literal comfort zone). So my mom ushered me into a stall and went about filling her syringe, then mine. Soon after she stuck me with the needle, it happened…the vial fell. I don’t know if it was my hand or her elbow that knocked it off from its perch, but something caused it to tumble down to meet its end.
It was a dramatic moment. If a slo-mo camera had captured the ordeal, I’m sure it would’ve shown my mother and I donning identical, horrified expressions as the vial smashed into smithereens on the tiled bathroom floor.
It wasn’t the end of the world; after all, we’d just taken our shots before the incident, and the vial wasn’t completely full. But it was just full enough that we were upset about all the wasted insulin that formed a small puddle on the floor.
I remember my mom gingerly picking up the pieces of the fractured vial and disposing of them, sighing as she went about the task. That whole experience resulted in a few things. 1) We made sure to get a vial protector soon after it happened to help cushion future insulin vials that were accidentally dropped and 2) We got insulin pens a bit further down the road, which proved to be much more durable and portable than vials. In fact, they made it so we could do injections at the dinner table, in the car, and just about anywhere with ease and discretion.
But this incident remains etched in my memory because it instilled always being careful with my diabetes supplies from that moment on. All of my diabetes stuff is expensive and extremely precious because of what it does for me, my mom, and millions of other people on a daily basis – it’s got to be treated carefully, always.
“It’s better to have it and not need it, than to need it and not have it.”
Growing up, this mantra was frequently repeated by my mother regarding my diabetes supplies. More often than not, I’d roll my eyes at the saying – not because I was annoyed with her, but because the prospect of carrying extra supplies “just in case” felt very inconvenient. My purse/backpack/overnight bag would already be crammed to maximum capacity, so squeezing in backup needles or insulin was practically impossible. But typically, I’d cave and make it all work somehow, because the fear of not having something essential when I was away from home was strong enough.
I’ve kept up this practice in my adulthood, as overnight travel and increased distance from home have become more common. And I was reminded why it’s a good idea very recently.
I was staying at a friends’ place for the night. They live about 45 minutes away from my house, which isn’t far, but it was far enough for me to want to make sure I had extra supplies. I definitely did not want to have to make that drive twice in one night, and I knew it wouldn’t even be a realistic option, because chances were good that I’d be drinking alcohol – it was game night, after all.
Pizza, beers, and laughs were had, and before we knew it, it was one in the morning. We all headed off to bed, and just as I do every night, I checked my blood sugar before I got totally settled.
I was wicked high – the mid-300s, actually.
I was worried, because I thought I’d been on top of my blood sugar for most of the night. I gave myself an extended bolus for the three slices of pizza I ate, limited my beer intake (too many carbs), and kept a watchful eye on my CGM. While I did know that my blood sugar was climbing, I thought that I was staying on top of it with correction doses. Apparently not.
No matter, I figured. The best I could do was take more insulin, drink some water, and try to relax a bit before bed. I didn’t want to sleep until I knew my numbers were coming down, but I also knew that my willpower to stay awake was fading. So I set an alarm on my phone to wake up in an hour and check my blood sugar again.
When I did, I was 377! I couldn’t believe it. I followed the same process again – bolused, drank water, set an alarm to wake up in another hour – and hoped for the best. But when my alarm blared again at 3 A.M. and I discovered that I was STILL stuck at 377, something told me that there was more to the story here. I lifted up my shirt to check my pod, which should’ve been securely stuck to my belly…except it wasn’t. The end with the cannula was sticking up, revealing that the cannula was not underneath the surface of my skin.
I felt simultaneously pissed off and relieved. I was mad because I’d just changed my pod earlier that day, so it should not have come off so easily. But I was relieved because finally, I had an explanation behind the super-high, super-stagnant blood sugars.
And I was seriously relieved that I’d thought to pack my insulin, a spare pod, and an alcohol swab in my overnight bag.
So there I was, changing my pod at 3 A.M. Far from fun, but it was necessary. I even wound up giving myself an injection with a syringe – yet another diabetes supply that I don’t really need to carry but had stowed away in my kit (just in case) – to ensure that my system had insulin in it to bring my blood sugar back down.
From there, it was a long night (morning!) as I set numerous alarms for the next few hours to wake up, check my blood sugar, and bolus more as needed. I couldn’t rely on my CGM for readings, because guess what? It got torn right off my arm as I tossed and turned in bed. Go figure, right? (I didn’t have a backup sensor because the CGM is one thing that isn’t exactly necessary. It makes life a helluva lot easier, but for a single overnight trip, an extra sensor wasn’t needed.)
I probably only got three hours of sleep that night, and I was pretty damn defeated looking at a shitty CGM graph the next day. But you know what? The whole incident serves as a stark reminder that it’s important to ALWAYS have backup supplies: You never know when you might depend on them.
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.
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!