The first time I was exposed to the health insurance marketplace, I was in college and wanted to be a responsible adult. I was maybe 21 or 22 years old and needed to find my own health insurance plan. It was 1994, and the words “pre-existing condition” were practically a death sentence in the world of insurance. But I was young and naïve and desperately wanted to be on my own and no longer a burden to my parents. After my first call to an insurance company, I was in tears. The man on the other end of the line actually laughed at me when I told him that I had type 1 diabetes (yes, they could ask that question back then). He proceeded to inform me that no one would be “foolish enough” to provide me with individual health insurance and that I shouldn’t bother checking with anyone else. I was devastated! At that point, I realized that my future job options would be limited by my need for health insurance.
I took this to heart and after graduation and only pursued jobs that could offer me excellent health benefits. Over the years, I went on an insulin pump and became an avid continuous glucose monitor (CGM) user. My supplies were always well-covered; my out-of-pocket expenses averaged around 20% of the full cost. With all that technology, I was able to better manage my blood sugars – quickly correcting when I approached a high or low and rarely, if ever, going above 250 mg/dL. Fast forward to 2016, when I was suddenly without my corporate job and its exceptional benefits. I could no longer afford my CGM sensors and was quickly back to fingersticks throughout the day. Thankfully, I had a stockpile of pump supplies, test strips, and insulin to carry me through, but my overall diabetes management took a nose dive. My A1C rose slightly, and I definitely went above 250 more times than I care to admit. I could no longer keep my blood sugars between the lines.
After a few years of scraping and scrounging supplies where I could find them , I was offered a new full-time gig in a field I was desperately trying to break into – health and wellness coaching. I was so excited to finally have a regular paycheck doing something I loved. During the interview, I neglected to ask more detailed questions regarding the health insurance options – I was driven to make this work no matter what and I thought a wellness company would have amazing health benefits. However, I soon discovered, much to my dismay, that the insurance options were horrific. In fact, there weren’t any options at all – a single offering of a high deductible plan with absolutely no coverage until I spent what seemed like a ridiculous amount of money given my limited salary. Based on my needs and history, I knew I could easily spend that amount in 3-4 months, but how in the world was I going to AFFORD that on my new salary? I was immediately transported back to that phone call in 1994 – feeling sad, frustrated, and terrified that my preexisting condition would once again limit my choices in life. Did I take the job? Absolutely. I don’t want my diabetes care to drive every decision in my life. Perhaps, at first, my desire for more consistent and cutting-edge diabetes management technology will have to wait. I will have to work harder to keep my blood sugars between the lines, but it’s not impossible. I did it once, and I can do it again. I will find a way! And I am absolutely grateful for the opportunities I do have and recognize that this technology is, unfortunately, a privilege reserved for those with the financial ability. Perhaps, someday in the not too distant future, we won’t have to place our diabetes management needs above the pursuit of our passions. We can only dare to dream!
Tricia W lives in Williamsburg, Virginia with her dog Fenrir. In addition to her new job as an onsite corporate Wellness Coach, she runs her own health coaching business, Tricia on Track, and teaches stand up paddle boarding. You might also catch her on Saturdays working at the local farmer’s market. She has lived with type 1 diabetes for the past 30 years, as she was diagnosed at age 16. You can follow her health and wellness journey on Instagram and Facebook.