Today’s topic for Diabetes Blog Week is “The Cost of Diabetes.” Over 80 bloggers posted on yesterday’s topic, and although I thought I was late (I didn’t get mine posted until 9pm EDT), almost 20 more posted after me! This is a great way to check out a bunch of the other diabetes bloggers out there. The diabetes online community (#DOC) is so active, with a rich diversity of voices. I’m glad to have found and joined this community. And now on to the topic of the day!
Drugs, Testing Kits, and Supplies Are the Beginning of What Diabetes Costs
“Cost” is an interesting word. It can refer to the usage of a variety of limited resources, such as money, time, energy, mood, and peace of mind. I’ll talk about the energy, mood, and peace of mind costs on Thursday. Today I will focus on the money and time costs of diabetes.
When I was first diagnosed with diabetes, I was prescribed Metformin and told to change my diet. For the first couple of months, I paid for my Metformin prescription. I don’t even remember how much it was at that time (almost 10 years ago), but I was very happy when I discovered that Publix grocery stores offer Metformin for free. That helped enormously!
Of course, I also had to buy a glucose testing kit. The cost of the kit wasn’t too bad, but I was shocked at how much the supplies cost. In the beginning, I was testing four or five times a day, so I went through a lot of testing strips, lancets, and alcohol swabs.
Eventually I discovered the cheaper Walmart brand of test kits and supplies. A 50 count bottle of their test strips is only $9! My husband’s endocrinologist scoffed at our choice of kit, but when she compared the results of the Walmart brand to the one she had in her office, she had to admit that ours was as accurate as hers.
Learning to Eat Better Costs Time & Money
Changing my diet was also somewhat costly, both in terms of time and money.
I had to educate myself about what foods I needed to cut back on or eliminate from my diet. I couldn’t get away with not having breakfast anymore, and I had to quit eating the cheap, fast-food lunches.
I also needed to figure out what I could eat and how to prepare it. This education process took time, as did learning to shop and cook differently.
Lack of Diabetes Education & Support Has a Compliance Cost
For the first few years of my diagnosis, I didn’t have healthcare, so I just did my best to change my diet, take my meds, and test often…at least for awhile. Unfortunately, the Metformin didn’t do much to lower my sugars, and although I learned a lot about which foods made my sugars worse, I couldn’t get my levels down below 250, no matter what I did with my diet.
Eventually I threw my hands up in despair and gradually started testing less and less often. I’d stopped the Metformin at some point, too, since my prescription ran out and it didn’t seem to help anyway.
I reasoned that I felt fine and that maybe my body had adapted to higher sugars. I didn’t understand how diabetes works, or how the high levels of blood sugar damage the body. I’d of course heard all the scary things that can develop as “complications of diabetes,” but I thought those were way in the future and maybe didn’t apply to me for some reason. Our minds can fool us in so many ways…especially if, on some level, we want to believe the illusion.
When the Condition Worsens, Costs Go Up
Unfortunately, the illusion that I wasn’t that sick cost me big later on. But I stopped seeing a doctor since I didn’t have medical insurance and wasn’t making much as a masters degree student. I finally got back in to see a doctor a couple years later, after I qualified for a medical grant for low income people.
When the nurse pricked my finger, she gasped. I was at 504. The doctor and nurse wanted to send me to the ER immediately, because they said I could go into a coma or die at any moment. But I felt fine. I thought they were overreacting. Regardless, I couldn’t afford a trip to the ER and told them so. I reminded them that the only reason I was in their office that day was because of this grant. They didn’t want me to leave unless they could bring my sugars down, so they asked if they could give me some insulin. I agreed, so they left the exam room to get what they needed.
I sat in that room, alone and getting more and more anxious, for almost an hour before the nurse returned with a syringe and a vial of insulin. She did another finger-prick and discovered that my sugars had continued to go up. I was at 596, almost 100 points higher. She fluttered anxiously about that some more, but she administered the 10 units of insulin and told me she’d check on me in a bit. When she checked my sugars again about 45 minutes later, we were both relieved to see that my glucose levels had fallen about 200 points.
The doctor prescribed 20 units of insulin daily and then they let me go. So I had to figure out how to get this new script filled. Of course, an injectable medication also requires a script for the needles, which also cost money.
Someone told me that the county health department had a pharmacy that could fill prescriptions at a greatly reduced rate. I was so relieved that it only cost me about $15-20 for both a 30 day supply of insulin and needles. I have no idea what that pharmacy charges these days, since the cost of insulin in this country has skyrocketed since then (almost four years ago).
Long-term Damage Almost Cost Me Something More Dear Than Dollars
About three or four months later, the next cost of diabetes hit me. I was driving with my best friend and she told me the name of the road I’d be turning onto up ahead. She was shocked at how close I had to get to the road sign before I could read it. Her concern forced me to realize that I was having more and more trouble seeing. I’d always worn glasses for distance, but lately, my distance vision was getting even worse. Time to get a vision check.
I went to the local Walmart Vision Center, since they were offering exams for relatively cheap. I still didn’t have insurance, since by this point, I was working for myself and hadn’t started making enough yet to afford to get my own plan. I also had not yet signed up for an Affordable Care Act plan since there was nothing “affordable” about the plans available (the deadline was approaching the following March or April).
About halfway through my exam, the doctor asked if I’d driven myself. I had, so I told her, “It’s okay. I plan to do some shopping when we’re done, so just tell me how long I need to wait before I’ll be safe to drive.”
“You don’t understand,” she said. “I haven’t dilated you yet and you’re already not safe to drive.”
Oh. Shit. She proceeded to show me the images she’d just taken that showed some irregularities on my macula and said I needed to see a retina specialist as soon as possible. I made an appointment with someone immediately and went in about a week later. They put me through a much more extensive testing regimen and then told me that I had Clinically Significant Macular Edema (CSME). They told me this was almost certainly brought on by diabetes, especially since it had been uncontrolled for so long.
CSME is when the tiny blood vessels in the eyes are damaged and start leaking into the eye faster than the eye can flush that extra fluid out. Left untreated, it can cause blindness. If we started treating it right away, we could likely preserve what vision I had left, although I wouldn’t recover any that I’d already lost.
Not Many Treatment Options for CSME
The specialist recommended a laser procedure to cauterize the leaking capillaries and strongly encouraged me to let him do the procedure that day. He said my left eye was in bad enough shape that he didn’t want to wait. Unfortunately, that procedure cost $1,500! So then I was freaking out about the cost AND the doctor’s insistence I get it done right away to prevent blindness. I didn’t have that kind of money, but I didn’t want to lose my sight. I didn’t know what to do.
I called my relatively new boyfriend from the office to ask his advice. The office was willing to break the fee into three equal payments of $500 each, but I didn’t even have that. Thankfully, my boyfriend was both willing and able to take care of the first installment with a credit card so that I could have the procedure that day.
The procedure was painless, although I did have to get dye injected into my arm, and it only took a few minutes. Unfortunately, several months later we found out that my right eye had continued to degrade, so we needed the laser procedure in that one. What’s worse is at the one month check up for the second laser procedure, the doctor said the cauterization wasn’t holding in either eye.
The next treatment option was to have medicine injected into my eyes. I got a second opinion from a doctor who said he didn’t even do the laser procedure anymore for this condition because its success rate was so poor.
So I wound up having eye injections in both eyes every few weeks for two years. I have finally gotten to a point where I no longer need injections (at least, for now), but that was a long two years!
Getting eye injections are traumatic experiences all the way around, even though they do numb the eye, but it was definitely both an emotional and a financial cost. Thankfully, by the time I needed the second laser procedure, my then-boyfriend and I had married and I was covered by his retired military health insurance. The insurance covered these expensive injections, too.
I Got Relatively Lucky, Others Aren’t as Privileged
I can’t tell you how thankful I am that this man came into my life in time to save my eyes. Diabetes almost cost me my vision! And I’m so humbled by the knowledge that I now have a privilege that many who struggle with diabetes don’t have.
I deeply hope that my story can help convey the true and serious costs and consequences of diabetes to those who are new to their diagnosis and to their friends and loved ones. I fervently wish I had found ways to take care of my condition earlier.
Part of my problem was that I was misdiagnosed and so the medication and dietary changes didn’t help me, where they often will help others who do actually have Type 2 diabetes. But I should never have let things go as long as I did. I should have been bugging the doctors to help me figure out how to get my sugars under control.
The irony is that I had finally gotten my diabetes under control with the insulin prescription a few months before that fateful vision test. The damage had already been done.
If you get a diagnosis of diabetes or prediabetes, please don’t wait. Please take it seriously and do whatever you have to do to get it under control. I’m lucky that impaired vision and some neuropathy are the worst complications I’ve had to deal with so far.