In Range but Out of Pocket: Living as an Uninsured T1D

There is nothing quite like being on the phone with your local pharmacy and having them tell you the life-saving medication you are about to pick up will cost over $2,000. Or booking your endocrinologist appointment and needing to determine if you can afford the visit plus all the blood work your doctor requires - this typically results in asking them, “What is the bare minimum I have to do in order to get my prescriptions filled?” Or, my personal favorite, essentially searching the dark web to try and buy supplies for your insulin pump and CGM that do not cost $600 a box for a month's supply. All of these things, and more, are part of my routine as someone living with Type 1 Diabetes without insurance.

I made the jump into being self-employed at the end of 2016, and I feel very fortunate to operate my own business. I get to make my own schedule, work with people I enjoy, and do something I love. When I made the decision to work for myself, I knew that insurance was going to be a challenge compared to my cushy corporate health care plan that covered everything. I was paying around $145 per month which came out of my paycheck for a plan that had a $500 deductible. Not a bad deal at all. That meant, at most, I was spending around $2,240 a year for all of my supplies, appointments, etc. To put that in perspective, on average, people with Type 1 spend nearly $10k a year on medical costs.

When I first went full-time with my own business, I was not making a ton of money, which meant getting insurance was still pretty easy. However, as soon as my business grew, I quickly could not afford any plans. My options were limited to $600 (or more) monthly premiums with insane deductibles… as in $10,000 insane. I remember the feeling of panic that set in when I realized I was about to be uninsured. Would I be able to afford the things I needed to keep me alive? While the answer has been “yes” so far, it has not come without difficulties. 

I remember the feeling of panic that set in when I realized I was about to be uninsured. Would I be able to afford the things I needed to keep me alive?

One of my more recent lack of insurance issues came along when I needed to replace my insulin pump. I had been on a Medtronic 670g since 2018, but unfortunately, mine finally bit the dust. I started looking at my options to either replace that pump or upgrade, and I was shocked that most of the pump manufacturers did not offer any cash discounts or decent payment plans for uninsured users. I was really hoping to move to an Omnipod and Dexcom combo, because as much as I love Auto Mode on the 670g, Medtronic’s CGMs are dinosaurs compared to literally any other brand on the market. Not to mention, going tubeless sounded nice.

After speaking to the Omnipod team, it was apparent the cost would not mesh with our budget. For a 30-day supply of pods, the out-of-pocket cost was around $500, not including the Dexcom which would be an additional $300 - $400. Just completely ridiculous if you ask me. So, I ended up getting the Medtronic 770g because they offered a monthly payment plan. The pump is still going to cost me over $7,000, but I am paying about $170 a month vs $800. I fully recognize being able to afford $170 a month is still a privilege, and I still think it is insane that there are such huge prices attached to life-saving medical devices. This (fortunately or unfortunately) was my only option. 

The cost of keeping yourself alive is what all of this really comes down to. While prices of insulin are FINALLY being regulated*, $35 may still make or break someone’s budget. The fact that people living with diabetes in the United States, with or without insurance, are often choosing between affording rent, food, or supplies, is embarrassing - at best.

My advice to anyone else who is in my position is to take advantage of any programs you possibly can, don’t be ashamed you are not insured, and negotiate everything. Again, absolutely wild that we - I - have to operate this way, but that is the current reality we exist in. I hope one day I can get rid of this added stressor.

Being your own organ is enough work. Worrying if you can afford to be your own organ should not be a problem to begin with. 

*Editors Note: While insulin prices are currently being regulated on the state and federal level, there are many loopholes that prevent this from helping everyone with diabetes. Currently, many of these regulations only affect the insured, leaving the uninsured, the most vulnerable population, without cheaper options.