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Diabetes: An Expensive, Lifelong Journey

By: Stephen C., Martin County

I was diagnosed with Type 1 Diabetes in 1964, when I was one and a half years old. I’m 57 now. When I was 12 years old, a nurse told me that I probably wouldn’t live to see 40 because of my diabetes. Imagine a nurse telling a New York City kid, with a little chip on his shoulder anyway, that he would die early. Her words certainly shaped how I made decisions as I grew up.

Living with diabetes has been a physical and emotional journey. I have had extensive laser surgery on my eyes going back to when I was 14. Since 2002 I’ve lost all of my toes on my right foot and two toes on my left foot which was really hard for me. I didn’t lose my toes because I was a “bad diabetic.” Actually I accidentally cut a toe at the beach one day. A day or two later, I went to work one morning and found my sock filled with blood. Two of my toes were completely black and had to be removed. Five years later right I had two other toes removed. Then I had a bone infection that wasn’t healing and I got sepsis. I had to learn to walk again. Since then, every year I get fitted for special inserts for my shoes and have specialized sneakers. The truth is, diabetes takes a little bit from everybody.

My wife has been a huge help along this journey. I wear a Continuous Glucose Monitor (CGM) to monitor and track my blood sugar. My wife has an App on her phone that will notify her when my blood sugar drops too low. When it drops below 60, she will call me from work to make sure I’m taking care of it. Diabetics have to be especially careful when sleeping because their blood sugar can drop without notice. That happened to one of my friends. He went into convulsions in his sleep and died.

I am currently disabled and have Medicare for insurance. When I first became disabled, I received Medicaid for insurance and all my doctor visits were taken care of. Once you are declared permanently disabled, you are taken off Medicaid and throw into Medicare. With Medicare, I also had to buy a secondary insurance. My diabetic testing supplies is free, but there are some co-pays with my doctor visits. I also pay for my Continuous Glucose Monitor (CGM) which is $150 every three months.

The price of insulin has changed so much since I was diagnosed in 1964. I now consider those early years the Dark Ages because back then, insulin was not a prescription drug. You could buy it over the counter for $10 to $12 a bottle. It wasn’t until the early 2000’s that the price jumped to more than $20 a bottle. The medication was actually affordable. But now, what’s happened the past 15 years has been close to criminal.

I’ve been told that they are three main manufacturers of insulin. If you watch the market closely, you will see that anytime one company raises their price, the other two fall in, almost in lock step with identical price increases. I’ve also heard that all three companies change their active ingredient slightly every five years so that there can’t ever be a generic form made. I believe they call that collusion. But, hey, they have the medication and can charge what they want. We don’t have a voice.

The big problem is that diabetics don’t have another option. We need the insulin to live. Diabetes is an expensive disease, and insulin is not a cure. Sure, frequent blood tests and glucose monitors help you keep it at bay, but without the drug, we die. Two of my friends had serious strokes in their 30’s due to diabetes. They’ve only recently regained the ability to walk and talk. At least four of my friends have died from this disease. I have friends who live in the Southwest who drive over to Mexico where it’s cheaper. Friends in Canada get insulin for people and send it to the US.

Why are American companies charging more for the same drug? Because it’s all about the money. I’m not against big business, but big business making money off sick people is just wrong. I’ve seen grown men weep over a broken bottle of insulin because the price is so outrageous. Insurance companies don’t allow replacements if you damage a vial of insulin or supplies which is one of the reasons diabetics are notorious hoarders. We are also known to use supplies, like needles, multiples times, even against doctor’s orders. Insulin pumps can easily bend or break. My pump is supposed to be changed every 3 days. If I can make it last longer, I do, but a lot of diabetics do this. I will probably die from this disease because rationing off my medication leaves me open to other infections, kidney failure, and blindness. I know people with good jobs and good insurance who pay between $400 and $500 a month for insulin. All because insurance companies want to pay out as little as possible. People say that diabetics have a dark sense of human, and we do. If we didn’t find something to laugh about, we’d cry all the time. And sometimes I do cry. Other people say that Medicare for all is socialism. They can call it socialism, communism, or whatever they want. I don’t care. I need healthcare.

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