This is Day 2 of Diabetes Blog Week 2017 and the topic is The Cost of a Chronic Illness. I’ve titled this submission “Type 1 – An Elitist Disease.” That’s another one of my “jokes” that really isn’t a joke. I often tell people type 1 diabetes is an elitist disease. I am joking, but seriously, if you want to take advantage of all the wonderful technology and programs and see an endocrinologist who really will work with you, you have to be able to afford it.

I use a continuos glucose monitor (CGM) and insulin pump. I upload all my data to websites that give my doctor access to my numbers so we can track trends and make real time decisions on how to make sometimes very small changes to my insulin levels. I see my endocrinologist every three months. I see an eye specialist – a retinologist – every six months. I have prescriptions for insulin, syringes, glucose test strips, glucagon, ketone test strips, pump supplies and CGM supplies.  All of this costs money. A lot of money. And this is all with insurance. I have to come up with that $2,000 deductible right off the bat every January too, meaning I have to pay full cost for usually the pump and CGM supplies then after that I still pay 80% of all those costs.

Not everyone can afford this. The majority of my monthly budget is dedicated to healthcare. My aunt, also a type 1 diabetic, who is on Medicare, told me that when October rolls around, Medicare has decided she has maxed out on her insulin allowance for the year and if she wants more insulin, she can have it, but she’ll have to pay full price for it.

Let’s recap: Medicare will not pay for a type 1 diabetic to have insulin for two full months of the year. Are you kidding me??? Insulin is over $200 per bottle without coverage. That is a life or death choice for many, if not most, people. Some doctors will give out samples to cover the gap – you’re lucky if you have one of those doctors. I have also argued ad nauseam with insurance companies that my daughter needs more than one bottle of insulin per month even though she doesn’t use an entire bottle per month – what if it breaks?? She also needs one in the office at school in her emergency supplies.

Just a sample of all the T1 supplies needed.

And glucagon? That one is over $100 WITH insurance coverage!! Everyone needs this in their house if they inject insulin. For those of you who may not know what this is, glucagon is a hormone that brings your blood sugar up.  It works in your liver to release glucose into your system. In people without diabetes, this is how your blood sugar will never drop to a dangerous level – your body will produce this and also slow your insulin production in response to food, exercise, lack of food, illness, etc. My body does produce glucagon. If you’ve been around me for any length of time, you’ve heard me reference “my liver throwing off sugar” for a bad low. Thankfully, that has happened to wake me out of really awful lows while asleep, albeit drenched in sweat and feeling sick as a dog. I can’t count on this though. No one can. It would only take one time for it not to kick in to land me in a coma or worse. Again, thankfully, my CGM has kept me from experiencing that kind of nighttime low since I started using it a year ago, but of course CGMs and their supplies cost a lot of money too. But back to the emergency glucagon kit, which is injected usually into muscle. It can save a person who is unconscious from a severe low. It could literally be the difference between living and dying and again, it is so expensive that I doubt lower income people have them. They expire too, so there is always another opportunity to cough up more cash. I confess that I keep expired kits around as I figure they would be better than nothing in an emergency if I had not been able to get a current scrip filled.

As for health insurance itself, I am currently on a COBRA plan. After my divorce a couple years ago, I opted for COBRA rather than the Affordable Care Act – the (at the time) impending election being my main reason for this. This plan will last me a bit longer and hopefully, this new proposed plan will not be in place and something that will actually cover people will be. I am scared to death about what my options, if any, will be for healthcare. As it is, I pay close to $500 per month just for the luxury of having insurance.

We can talk all day about what it costs to be a healthy diabetic. It’s expensive to get the best care, but it’s expensive to get any diabetes care, good, bad, or otherwise. I spent the majority of my adult life not really taking chances career-wise – I had to have a “regular” job that would provide insurance because I was not insurable otherwise.  I have had several online debates lately with people touting holier-than-thou “why should I have to pay for sick people” attitudes. It’s a ridiculous stand, in my opinion. It’s very easy to point fingers and feel superior until you or your mom or kid or spouse or best friend suddenly is diagnosed with something, has an accident, or just finds out that they’re not as “healthy” as they thought they were. I don’t wish this on anyone. I do wish that people would see that we, as type 1 diabetics, are quite used to paying through the nose to maintain our health.  We need real access to good healthcare, as does everyone, not high-risk pools. I say to to them, you really have no idea at all what this costs – financially, physically, emotionally.

So, you see my “joke” isn’t too far off the mark. I live for the day when I can laugh at the joke I used to tell – hopefully sooner rather than later.

Stacey Rose

Stacey Rose is a type 1 diabetic mom of 3 (one of whom also has type 1). She is writer, runner, and music lover. She lives in Massachusetts and travels to LA frequently.