Dollars, Deductibles, and Drugs: Discovering the Costs of Living with Type 2 Diabetes

The financial burden of managing diabetes can be surprising for some. Phyllisa Deroze shares how these costs affected her monthly budget.

Slapped With the Price Tag
I had no idea how dark a shadow the costs of diabetes would cast — on my budget and my life — until I began to navigate the ins and outs of living with Type 2 diabetes. It all began the night I was discharged from the hospital where I’d just been diagnosed.

I arrived home around 8 pm knowing I would need to begin my new routine of checking my blood sugar as instructed at the hospital. So, at 10 pm, I pulled out the shiny glucometer I’d been sent home with, and looked for the strips I would need to test the drop of blood. I couldn’t find them anywhere. Finally, in frustration, I emptied the bag containing all the items I received (pamphlets on diabetes, alcohol wipes, insulin pens, and more), and dumped them on my bed. There were no test strips.

“No problem,” I thought, “I’ll just go to Walgreens and buy some.” When I got there, I saw the price tag: $79.99 for a small box of 50 strips. That wasn’t going to work. I left and drove to the CVS around the corner. Same price. “Could this be real?”

With rising anxiety, I spoke to the pharmacist, explaining that I’d just been discharged, which she could see easily, given that I was still wearing the hospital ID bracelet. She suggested that I return to the hospital and see if I could at least get a prescription for strips, because without one there was nothing she could do for me. I went back out into the night, drove to the hospital, but I was unable to get a prescription or any assistance beyond being directed to the ER, the same place I’d landed 6 days earlier. I left the hospital wishing someone had shown me some compassion and understood that it wasn’t my fault that I was discharged carelessly. Within the first few hours of being alone with my diabetes diagnosis and management, I was slapped with the price tag, and I sobbed.

The Dollars Needed for Deductibles
Prior to my diagnosis, I didn’t have a clear understanding of health insurance and how deductibles worked. I even missed the deadline to sign up when I switched jobs and moved to a new city mid-year, because I didn’t understand the process. My insurance, therefore, didn’t begin until January 1st: Had the experience of my diagnosis happened in December rather than in February, I would have been in more financial trouble. I had a high deductible —.when I’d first signed up for insurance, the agent assured me that since I was young and healthy, I didn’t need to worry about it. Well, I was now young — but with a chronic illness and a 3,000 deductible. I didn’t worry at first, but when I started developing multiple symptoms, I knew it was time to see a doctor. After I was diagnosed with a chronic illness, I needed medication that was not available over the counter. Things had gotten a lot more complicated, and I had to learn how to navigate the health insurance system because it had just become my lifeline to medication and care. A high deductible meant that I was responsible for more out-of-pocket expenses. Even though I met the deductible very quickly, I ended up paying more than $10,000 out-of-pocket the first year of my diagnosis.

Counting the Copays
With my new diagnosis, I went from seeing a physician annually to bi-weekly.  I was overwhelmed by the many visits to the different specialists: the endocrinologist, the primary care physician, the cardiologist, the dentist, the gynecologist. Although I had the gold plan — which is higher than the bronze and silver plans, and often referred to as the “good insurance” — and eventually met my deductible, I was still charged a $50 copay to see my primary care doctor and $75 for all the other doctors that I had to see routinely.

Funding New Food Habits
With good nutrition being one of the main concerns for people with diabetes, it meant that I was shopping at better grocery stores and more frequently. Fresh spinach doesn’t last as long as frozen. Because I wanted to master carb-counting and live longer by eating healthier, I invested in better food. The decision to add more leafy greens and less starchy vegetables to my diet meant that my monthly grocery bill nearly doubled.

Living with Financial Toxicity
Managing diabetes is the most expensive experience of my life. I had no clue just how much it cost people with diabetes to stay alive until I joined the club. The impact of financial toxicity on the diabetes community is a serious problem, and I haven’t even mentioned the price of insulin. There are many studies that link diabetes with depression, and from my personal experience, not being able to afford supplies and medication is depressing. Imagine, I was struggling severely emotionally with accepting the diagnosis and grasping for money to afford my supplies. Like many others, I too have reduced units of insulin, re-used lancets, taken money from my savings account to buy medication, and skipped testing my blood sugar in order to save a little money. Even with that, diabetes remains the costliest item on my monthly budget, not to mention the unexpected sacrifices I and so many of my fellow patients have had to make to stay alive.


Phyllisa Deroze is a prominent patient advocate for Type 2 diabetes and a Fulbright Alumna professor of American Literature. On February 15, 2011, she was diagnosed with Type 2 diabetes after passing out in her bathtub. During the 6-day hospital visit, she discovered that most information about Type 2 diabetes was full of grim statistical data, lacked cultural competence for African Americans, mainly focused on elderly people, and didn’t highlight helpful ways to live healthily with diabetes. Therefore, Phyllisa began blogging at DiagnosedNotDefeated.com and subsequently founded BlackDiabeticInfo.com to help fill the gap. Phyllisa lives by the motto “Diagnosed NOT Defeated” and continuously strives to inspire others.

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