I've been sitting for weeks trying to write this article, but hadn't been able to even type a sentence until now. For those who remember, I told the story of my Type 1 Diabetes diagnosis on this site just over three months ago. Today's piece serves as somewhat of a follow-up to that one, although not to go into more detail about my diagnosis itself; to learn about or refresh your memory on that story, you can read it here. Today, I'll be focusing on the cost of Diabetes, which doesn't boil down to just dollars and cents. Diabetes can affect you emotionally, mentally, physically and yes: financially. Bottom line? This disease can take a toll on you in a number of different ways. I want to make sure that anyone reading, however, understands that these are just the costs that I personally face. Other Diabetics may experience lesser or greater costs -- more often than not on the greater end.
Everyone's issues with Diabetes matter, regardless of how big or small they may appear. The most prominent of those issues tends to be cost, which can also be one of a diabetic's biggest worries, if not the biggest, on a daily basis. Personally, the (financial) cost of Diabetes is definitely what weighs on my mind the most. I also worry about the fact that insulin and diabetic supplies are not accessible to us all. Let's start with a little background on insulin, because it's a very important factor when talking about the cost of Diabetes. Insulin was discovered by Sir Frederick Banting, Charles Best and J.J.R. Macleod at the University of Toronto in 1921. Insulin was first used in the treatment of Diabetes on January 11, 1922.
Frederick Banting and his team went on to win the Nobel Prize in Physiology or Medicine for the discovery of insulin in 1923; Banting then decided to give the patent away, instead of attempting to get insanely rich off of it, for free. He did this because he wanted insulin to be available to everyone who needed it, not to be held out of reach from people at excessive prices. I even read somewhere that it was Banting's desire for insulin to cost no more than $1, so its current cost must have him rolling around in his grave. You won't meet a diabetic who isn't grateful towards Dr. Banting -- not only for his discovery of insulin, but also his thoughts on how it should be priced. Banting wanted insulin for all, something that many still fight for.
Insulin is a life-sustaining hormone, meaning that no human can survive without it. If your body cannot produce insulin, you must take it via daily injections (MDI) like I do, or use an insulin pump. MDI requires a diabetic to be on two types of insulins, one that's long acting and another that's rapid acting. The pump is for just one type of insulin, but most Diabetics on the pump require more than one vial of insulin a month (some up to six). Just to give you an idea of what this costs: I use the Humalog U-100 Kwikpens for my rapid acting insulin, the list price of which (for a box of 5 pens) is $530.40. The cost of insulin also hinges on whether you have insurance, however and, if so, what your insurance will cover. My long acting insulin is Tresiba, and the list price for the U-100 flex touch pens (again, it's a box of 5) is $620.
Remember, though, this is only the cost of insulin itself. We haven't even begun to get into the cost of Diabetes as a whole, especially because of all the other supplies a diabetic needs. For MDI, you need needles to go along with those pens, a glucose meter, test strips, a lancet device and lancets to go in it. You also need alcohol prep pads, a sharps container for your waste, etc. I'm lucky that my insulin is mostly covered by insurance, but sadly, this isn't the case for a lot of Diabetics. There are many people dying from rationing insulin (again, a life-sustaining hormone), because they simply cannot afford it. Where is the humanity in that?
When I was a newly diagnosed diabetic, I had an idea of the cost of the disease, but I didn't know just how much drug companies price gouge you on both medication and supplies, such as test strips and needles. I had to get a coupon card from the Contour website just to get my test strips at a manageable price. My insurance plan doesn't cover medical devices, like the pump or a CGM (continuous glucose monitor) -- you know, the things that make Diabetes easier to manage and make life a little less stressful? After 2 years of battling with my insurance, I was able to get a CGM through my pharmacy benefits. This is a $60 co-pay each month; I also incur additional costs from having to buy supplies like Skin Tac/Tac Away and tapes to keep my CGM on for the whole week.
Having a CGM gives my doctors the ability to see trends and determine a better plan for my Diabetes management. This data helped them determine that I was going through the dawn phenomenon while I was sleeping. The dawn phenomenon is when there's an abnormal early morning increase in blood sugar, usually between 2 and 8 A.M. There are many nights where I go to bed with my blood sugar in the 90's and wake up with it in the high 200's. There are a few ways to combat the dawn phenomenon, one of which is the insulin pump, which could be an absolute game changer for me. The pump would recognize when my blood sugar is going up in those early morning hours and adjust my dosage accordingly. This would hopefully keep my blood sugar at a normal level, instead of seeing it constantly rise higher.
Unfortunately, my need for this insulin pump has turned into yet another battle with my insurance. As I mentioned above, my insurance plan does not cover medical devices. Well, it turns out that my pharmacy benefits, which assisted me in getting my CGM, don't cover insulin pumps. The pump that I'm currently looking at would cost me $3,300 upfront, in addition to the monthly cost for supplies. This would meet my deductible and lower the rest of my costs by 80% through the next year, which would be absolutely amazing. I could save a great deal of money to pay other debts and spend on some of the different diabetic supplies I need, which would be a major boost to my mental health and lessen the stress that I face on a daily basis. Unfortunately, due to other medical debts, student loans, etc., this $3,300 cost is just not doable for me without some help.
I'm hoping that, through this piece today, I can raise the money needed for my insulin pump, because it's something that I feel I desperately need. Additionally, I'm not eligible for the financial assistance Medtronic offers for their pump, as the household earnings between my husband and I combined come in just above the amount allowed in order to qualify. Due to all these factors, and with November being Diabetes Awareness Month, I'm hoping to appeal to the generosity of people who are able and willing to lend a hand.
I mentioned earlier that the cost of Diabetes is not just a financial one, and situations like these are what I mean by that. Diabetes has affected my mental health as well; I talked about this a bit in my first article, but I felt like I needed to touch on it again. My diagnosis put me into a state of depression and also sent me through the various subsequent stages of grief. It was hard to accept at first, but eventually I was able to come to terms with it...because I had to.
Diabetes is a fight for your life every day. It often messes with my emotions as well, especially when I have high blood sugars. Sometimes I just want to wallow in my diagnosis, while other times I just don't want to deal with it. Of course, there are also times when I'm feeling determined and want to make sure that I live the best life I can. More than anything else, I want to use my diagnosis as a way to spread awareness and be vocal in the diabetic community. Diabetes has drastic effects on your physical health too; this may seem like an obvious point, due to what the disease is, but I'm talking about more than just taking insulin, pricking your finger or the other complications that can plague diabetics. What I mean is missing sleep due to lows (or even just the fear of lows), along with the stress of the disease that can manifest itself in many different ways, such as headaches, acne and much more.
I think that it took me so long to type all of this out because I hate asking for help, especially financially. After all, there are so many more people who need the money, especially other diabetics. However, my counselor has helped me realize that just because others need assistance doesn't mean that I don't need it, too. I know now that I can and should reach out for help when I need it. So, my hope is that I can raise the money needed for my insulin pump and then also use excess donations to then help other diabetics. Once I reach my goal, I plan on donating the excess funds to T1International. I also hope that, in the future, I'll be able to help more diabetics. My biggest desire is that one day, insulin won't be so outrageously priced, but rather available at the low cost that Dr. Banting envisioned. I also hope to see CGM's and pumps become more accessible to all who need them. I'll never understand why insulin, supplies, CGM's and pumps aren't already accessible or affordable to all.
This isn't just an issue in the United States, either, as insulin being largely inaccessible is a worldwide dilemma. I'd ask that you all please take the time to read about #Insulin4All, an initiative started by the same organization I mentioned earlier, T1International. One of the reasons why I chose them to receive any excess donations we receive from this fundraiser is because of the work they continue to do for diabetics like me. They're also one of the only organizations out there that do not accept funding from Big Pharma and are constantly working to make insulin accessible and affordable to all who need it across the globe.
I've decided that I want to be a part of the solution to the issues diabetics face. This is one of the biggest reasons why I've joined the fight to bring Kevin's Law to Texas. Kevin's Law is a piece of legislation which allows a pharmacist to dispense an emergency supply of a chronic maintenance drug. It was inspired by Kevin Houdeshell, who was unable to get his insulin refilled over the New Years holiday because his doctor couldn't be reached. Without a refill, Kevin began rationing his insulin, which ultimately led to his death. Following Kevin's passing, his family has advocated for emergency prescription refill legislation across the country. 17 states have passed these emergency prescription laws since the family started advocating and I will not rest until Texas does the same.
Thank you all once again for taking the time to read this article. If you have the means to donate to this cause, my Venmo is @Haley-Williams-1219 and, again, any donations that surpass my $3,300 goal will go directly to T1International. If you are unable to donate, I hope that you are able to assist me in spreading awareness by sharing this post with others. Your efforts are immensely appreciated and would do wonders to help me and others just like me get the help we need.
- Haley (@CSIHALEY)