There are a lot of things the “healthy” just don’t get. It’s near impossible to understand certain aspects of living with chronic illness unless you literally live with it. Ignorant questions and comments are one thing, but looking into the eyes of someone you are trying to explain it to and seeing that they just don’t, and probably never will, get it can be frustrating and heartbreaking.
The topic of #Insulin4all is one particularly heartbreaking subject for me. On the one hand you have people who jump to the assumption that we think insulin should be paid for by the taxpayers and/or completely free to any and all diabetics who need it. Although there are some people out there that would love this (me included) the reality is that most of us are actually simply fighting for affordable insulin (and testing supplies) and easier access to it!
We don’t want handouts, we simply want to be able to afford the insulin we need to stay alive, and be able to get the proper amounts of it to stay healthy.
You have to understand that insulin is a naturally produced hormone in the human body. It’s not at all a medication, it is a hormone required and made by the human body to keep humans alive (animals as well). Type 1 diabetics can’t make this hormone and therefor must inject it every single day (multiple times) in order to stay alive. The argument here is that we have a right to this hormone and shouldn’t have to pay outrageous amounts of money and go into serious debt just to stay alive. And we shouldn’t have to be forced to ration our insulin and suffer horrible complications due to rationing!
Big Pharma is a huge problem and, yes, most of us have a love/hate relationship with them. You see, they mass produce and provide us with the hormone we need to live. But they also know we can’t live without it and therefore take advantage of our desperation and charge unreasonably and outrageously high prices for it. Understand here that if you tally up the costs the companies spend to provide this product and tack on a reasonable profit markup, then you have a product that should be charged a maximum of $35 per vial. Instead greedy Big Pharma, knowing quite well type 1 diabetics will die without this hormone, mark it up no less than 250% and charge anywhere from $200 to over $400 per vial.
Understand that one vial of fast acting insulin on average lasts a type 1 diabetic less than a month. Usage varies per diabetic per day. Insulin is not a medication, you do not take a set amount at the same times everyday, individual needs vary drastically. I, a pumper who only uses fast acting insulin, might use 60 units one day, 100 units the next, and 50 units the next! For someone who doesn’t have insurance or has ‘bad’ insurance, the unreasonably high cost of insulin is literally killing them!
I’ve been there. I, a type 1 diabetic, spent several years without any insurance coverage at all. The only insulin I had access to was Novolin N and Novolin R. There are arguments out there that this insulin is available without prescription and at low cost for those who need it, so there is no need to complain about the high cost of ‘the good stuff’. This is only partially true. When a diabetic is forced to use obsolete, “bottom shelf” insulin this may keep them alive, but not very healthy. There is a reason diabetics were not healthier, and tended to have a shorter lifespan and higher instance of complications back when these insulins were the best option. They help a lot, there’s no denying that, but they have limitations. And the argument of #insulin4all is not just having access to insulin, this is only half the fight, but to not be used as cash cows for heartless monsters like Big Pharma. Companies that are supposed to be helping us to live, and live healthy, are playing with our lives and proving they care nothing for lives and health but only for money. They absolutely do not have their customer’s best interest at heart.
We as diabetics spend every day living under a cloud of knowledge and weight that this disease can kill us at any moment. We don’t need the added stress of wondering if we’ll be able to afford the only thing that is keeping us alive. When I lived without insurance and one step up from poverty, I used the obsolete insulins, Novolin N and Novolin R and I was grateful to have them. But I was also painfully aware that they were only keeping me alive and not necessarily healthy. My lack of insurance and lack of money caused me, on top of taking sub-par insulins, to also have to ration those insulins. I was taking the bare minimum I needed to simply keep functioning. My BG was high all the time and as a result I was still alive but my body was slowly falling apart. I knew it was only a matter of time before I died.
I lived in fear 24/7. And there was nothing I could do about it.
In simple terms, my lack of access to affordable and good insulin forced a slow, painful death.
The only reason I didn’t actually die was because I was able, finally, to get good insurance that afforded me good insulin that I also didn’t have to ration. But my years without affordable good insulin left me with heart disease that got me a triple bypass, peripheral neuropathy that leaves me in near constant pain, retinopathy that has taken half my sight, gastroparesis which makes eating an adventure in nausea and vomiting and vitamin deficiencies. I could go on and on about how dangerous it is to be forced to live without affordable insulin and access to it!
Another argument we hear is, “It’s diabetic’s responsibility to take care of themselves through diet and exercise. If you take care of yourself you won’t need as much insulin.”
This is the most ridiculous statement I’ve ever heard. If you don’t have access to insulin, you suffer and die. Period. I could exercise 24/7 but if I don’t have the right amount of insulin I’m still going to suffer and die. I could starve myself, but without the right amount of insulin I’m still going to suffer and die. Period.
It’s a balance. And the fact remains we need insulin to live, and we need the right amounts of it to stay healthy. And there is no good excuse for the unreasonably high prices charged for insulin. And there is no reason some diabetics should be forced to live on obsolete insulin.
And let’s not even add to all of this the high cost of test strips. In order for a diabetic to know if their insulin dosages are correct they must know what their blood glucose is at at any given time. A healthy diabetic checks their BG no less than 4 times a day, usually much more often. Test strips, on average, cost $1.50 per strip. This may not sound like much, but it adds up, especially for someone who lives on a low budget and/or fixed income. When I was living without insurance and just above poverty level I couldn’t afford test strips at all and never knew where my BG was at (all I knew for sure is that it was high).
This is literally living a constant game of Russian roulette.
Type 1 diabetics that have good insurance have access to a lot of really awesome and greatly beneficial tools to aid in living a long and healthy life with this disease. But if you strip it all down to the very basics of what a type 1 truly needs to be healthy and live long, it comes down to 4 things. 1) Good insulin in adequate amounts. 2) A glucose meter and affordable test strips (in adequate amounts). 3) Adequate diabetes education. 4) Food.
Test strips and insulin shouldn’t cost this much. There is no good reason at all that they cost so much.
Big Pharma greed is the only reason type 1 diabetics are still dying every day even when they are tying so hard to be healthy.