I was diagnosed with Type I Diabetes in 1984, when I was in my early years of high school. Back then, it was called Juvenile Diabetes and I had all of the classic symptoms: extreme weight loss, extreme thirst, fatigue, frequent urination and a fruity smell on my breath.
What caused my Diabetes? We'll never know exactly, but poor genetics and just pure "luck". When someone is diagnosed with Type I Diabetes, the body starts attacking itself and the pancreas is the battleground. My pancreas stopped producing insulin and my body suffered.
In the past 30 years, I've been a good diabetic and a not-so-good diabetic. I've taken control of this disease many times and it has taken control of me many more. I've had periods of very tight blood glucose control and periods of rebellion against this shitty disease and my body has suffered from it.
Diabetes affects the blood vessels in your body, especially the teeny-tiny ones in some very important parts: your eyes, your kidneys, your heart and your limbs. I was diagnosed with Proliferative Diabetic Retinopathy in the late 1990s - just as I was in the process of getting married. I have had many eye surgeries to repair the damage caused by this silent disease. No, I didn't have LASIK - I have hundreds of laser burns on my retinas to stop the growth of new blood vessels on in my eye. I've had invasive surgery in both eyes (yes, they cut open my eye, placed microscopic tools in there and repaired part of the damage) and at age 40, I had cataract surgery in both eyes. The eye surgeries in the 90s increased my risk for early-stage cataracts. Once again, I am so thankful for wonderful doctors who have the talent and skill to help me see.
In 2013, I had a heart attack and had quadruple bypass surgery to repair the damage that diabetes has had on my heart. When my surgeon visited me after looking at the results from my heart cath, she told me that I had a very strong heart muscle, but my arteries were just shot after living with diabetes for 30 years. My arteries had blockages between 60% and 99%. When your blood sugars are high, your cholesterol and triglycerides are high. This causes plaque buildup in your arteries.
Thankfully, I have had no major problems with my kidneys. But I know that without tight control, I could suffer kidney damage in the future. That's what leads me to this rant.
In 2008, I was lucky enough to be approved for an insulin pump. The development of insulin pumps has greatly improved in the past 30 years (the first ones were introduced about the time I was diagnosed in the early 1980s) and the costs are "manageable" by insurance coverage. Most insulin pumps are covered under a 4-year warranty, as mine was. In 2012, my insulin pump went out of warranty and my wife and I decided to keep our fingers crossed and not replace it. Even with insurance coverage, it is about a $2,000 out-of-pocket expense. I have taken great care to make sure it functions normally, because it helps me maintain control of this disease.
After my heart surgery, I had to start taking a medication for my heart that affects how I react to hypoglycemia - also known as an insulin reaction or low blood sugar. With my new medication, my body doesn't automatically recognize that my blood sugar is dropping too low. Normally, when having hypoglycemia, my body's adrenaline glands kick in and it alerts me to the low blood sugar (especially in the middle of the night when I am asleep). With this new medication to keep my heart healthy, my body doesn't do this. One night when I was still in the hospital, my blood sugar dropped to 20, which is very dangerous. Because of the new medication, I didn't wake up and realize my blood sugar was dropping.
Because of this latest development, my primary physician, my diabetes specialist and I have decided that a new insulin pump with a continuous glucose monitor would be the best treatment of my diabetes. This combination of pump/CGM would stop delivering insulin in the case of hypoglycemia and would also help me keep a tighter control of my overall blood sugars.
We filled out the forms, had the doctor provide information how it was medically necessary for me to have this new technology to treat my chronic disease. The insurance company (who had just processed the multiple claims from my open-heart surgery) decided it wasn't. They denied my claim and said it wasn't medically necessary.
Here is an example of a patient who wants to take control of his disease which will lower his chances of developing any more life-threatening complications (kidney failure, amputation, etc) with a FDA-approved device that will help me keep a tighter control of this disease, but the insurance company doesn't want to pay for it.
Wouldn't they want to help me with preventative treatment of this chronic disease and lower the risk of me developing additional complications from this disease in the future? Wouldn't they pay for a new pump with CGM instead of dialysis or kidney transplant in the future? How about another heart surgery?
We have filed an appeal to my claim and I'm keeping my fingers crossed that with additional information they will come to their senses and approve this. I want to live to watch my children grow. I want to be a productive member of society. I want to have a decent quality of life.
All I want is a new insulin pump with continuous glucose monitoring!
