My name is Marcus, and Nov. 25, 2000 will always be seared into my mind as the day my life changed. It was my sophomore year of high school. I was going to the bathroom once every five minutes and was very lethargic. No matter what I ate, I kept having to pee. I wrote it off and thought nothing of it until the day I got really sick. I tried sleeping it off but woke up to a vomiting spell. The lethargic feeling would not go away. It took all the strength I had to move from the couch to the bathroom. This didn’t feel normal.
My mom had a friend who came over to our house who said I didn’t look good and should go to the hospital just to make sure it wasn’t anything serious. When we arrived, everything got blurry. I couldn’t see even two feet in front of me.
The doctors ran tests and thought it was just a viral infection. A couple of hours later, however, the doctor returned to say, “It’s just diabetes.”
I couldn’t believe my ears. I had been in and out of it all day. Hearing that made me pop up off the hospital bed. The doctor was unaware that I didn’t know I was diabetic. I couldn’t even wrap my head around what that meant. I just knew things would be different for me. When they checked my blood sugar, it was pushing 900. Had they sent me home, I wouldn’t have made it another night.
They began pumping IVs of insulin into me to get my blood sugar down. The next morning, I remembered feeling how cold the insulin was going into my IV and how much it hurt as it warmed up. It’s the craziest and most welcoming sensation I have ever felt.
At the time I was diagnosed, I used NPH and regular insulin. While it was free with insurance, to purchase it over the counter was $30 per vial. The issue with NPH and regular insulin is that they peaked at different times. If either peaked before or after the other it caused issues with my blood sugars. How do you combat that? You get up at the exact same time and eat the exact same thing every day. No matter how mundane the meal is, you learn to eat it because if you don’t you run the risk of it being too high or going low.
When I reached the age of 18, I lost my insurance. I paid for my meds out of pocket, and it was okay until I started the winter quarter of my freshman year in college. I had spent my savings on paying for my meds, books, and other living expenses. I was constantly having to decide between buying my insulin or getting the materials I needed for school. My grades suffered and my A1C took a hit. I was rotating between taking NPH and regular insulin because there was a time I could only afford one or the other. It was a rarity when I could afford both. It was horrible.
In Spring 2004, my mom went to work for another company and I was able to start back on her insurance. I was able to get everything I needed. Then around the winter of 2007, I noticed that no matter how much insulin I took, my blood sugar kept running high. I went to my doctor and he suggested that I had outgrown my current insulin regimen. It simply didn’t work for me any more. He recommended I switch to Humalog for my short-acting and Lantus for my long-acting insulin. I had heard about them before, and I knew they’d be more expensive.
Reluctantly, I made the switch. With insurance, I had a $50 copay for both medications. It was a bit more than I expected, but I figured if it stopped me from running high all the time, it would be worth it. One day, I decided to take the Humalog for a test run. I rarely eat candy, but I had a craving for a peanut butter Twix. I counted the carbs, took my insulin, and ate the Twix. I enjoyed every minute of it, as it had been the first time in seven years I had anything sweet without my blood sugar being low. I took my blood sugar a couple hours later and found I was normal. I felt amazing.
However, I was ultimately right –– Humalog and Lantus were expensive. I faced their high prices when I left my high-stress job. I was blessed to have a 90-day supply of my meds. I figured a job would become available by then, but it was during the Great Recession, and I never found anything full-time.
I quickly started running out of insulin. One morning, I woke up and called my doctor to see if there was anything he could do. I explained my situation to the nurse, and she said he’d get back to me. An hour later, he called back and said he had samples of Novolog and Lantus that he could give to me until I get back on my feet. It was a temporary solution to a long-term problem.
This became a pattern in my life: All too often, I was struggling to get my insulin — even with insurance. One of the hardest times came in 2011. I was out of work for a little bit, and I couldn’t afford my insulin. I was rationing, and my wife was going without food so I could eat. When I started my new job with good insurance, I immediately called my pharmacy to fill a prescription for my Novolog. After jumping through some hoops, they told me because I hadn’t met my deductible, a 90-day supply of Novolog would cost me $793. I had $4 in my bank account at that time and I couldn’t get a loan. I had to cancel the prescription.
Here I was, again rationing insulin. My doctor had no more insulin samples. My back was against the wall. It didn’t matter whether I was on insurance or off — insulin was just too expensive. I felt helpless, angry, and frustrated. I told my boss what was going on and he offered me a loan to help get my meds. I wouldn’t take the check at first. I got a prescription for a 70/30 insulin pen for $60 and tried to use that. It kept my blood sugar high in the evenings and running low throughout the day. After a week of that, I accepted the loan and got my meds.
My struggle with expensive insulin is one that many Americans face. To be completely honest, it’s traumatic. Had it not been for my boss, I’m not sure how I would’ve gotten through that rough patch. It hurts to hear people say things like, “Try a cheaper insulin.” Diabetes is not a one-size-fits-all condition. What works for one person may not work for the next.
Insulin has been around for decades. The fact that we still have to find ways to make it affordable in what is supposed to be the best country in the world is a disaster, to say the least.
“Like Water For Chocolate” is the English translation for a Spanish book titled “Como Agua Para Chocolate.” The meaning behind the saying is that one’s emotions are on the verge of boiling over. When it comes to the cost and accessibility of insulin in this country, it’s only a matter of time before things become like water for insulin.
I am lucky — I am in a much better place right now. I can afford my insulin, but I’m tired of reading stories about someone passing away because they couldn’t afford the medication needed to survive. I’m tired of worrying about what would happen to my family if I lost my job or had to change insurance. It’s simply unacceptable.