I was diagnosed with Type 1 diabetes at 13 years old. At the beginning of 2006 I came down with a bad cold that lasted for at least a month. Slowly, over the course of the year, more and more symptoms started showing up.
I was losing a lot of weight, but always felt hungry and thirsty. I was a very active teenager; I played softball, danced, and was in the wrestling team, so I attributed the weight loss to all of the exercise I was doing. But we have a strong family history of diabetes, and one day my parents noticed something was wrong.
It was two days after Christmas and I was eating an insane amount at dinner. I had maybe five or six helpings and drank nearly a gallon of water in the span of an hour, but was still feeling hungry and thirsty.
My dad pulled me aside and checked my blood sugar with my older brother's glucose meter. Any blood glucose level above 600 did not register on that specific meter, and mine just read: "High." We drove to the emergency room and it turned out my blood sugar level was over 700, which is extremely dangerous.
I was rushed to hospital and diagnosed with diabetes. I spent two or three days there and was absolutely terrified. I was afraid of needles and it took me a while to become comfortable giving myself shots of insulin.
Initially, I refused, but then one nurse looked me in the eyes and said: "If you don't learn to do this, you're going to die."
Learning to live with diabetes
Coming back to school after winter break was strange. Fortunately, I wasn't the only diabetic—there were three of us in total, so there was some support when it came to checking blood sugars and taking insulin at lunchtime in the nurse's office.
But there was a lot of fear from my classmates. One day during health class a kid moved his chair away from me and said: "I'm not going to sit next to you. I don't want to catch your diabetes."
Back then I was very private and wanted to keep my diagnosis to myself, but my teacher took it upon herself to stop what we were learning about to educate the class about my illness.
Other times teachers would accuse me of faking my illness to go to the nurse's office or try and take my insulin pumps away from me because they thought they were cellphones. It was a big adjustment for everybody.
At the time I was on my parents' health plan, but insurance only covered the cost of insulin up to a certain point. I'm not sure what my insulin would have cost them. I have always used around two and a half vials per month, so it would have been expensive.
At 18 years old I married my husband and was kicked off my parents' health insurance. My husband is in the military, so fortunately their healthcare system covers the cost of my insulin if I get it at the military pharmacy. If I were to pay for it out of pocket it would cost me $50 per vial.
Whenever my husband renews his contracts, he always has to consider our health insurance coverage. Somebody like me, who has a chronic illness, will need that insurance every month, whether it's just for prescriptions, for doctor's visits or, God forbid, a stay in the hospital. My condition is always something we have to consider.
Becoming a nurse
Ever since the third grade I'd wanted to work in the medical field, but after I was diagnosed with diabetes and started navigating the healthcare system myself as a patient, I knew for sure it was the career for me.
I noticed that none of my doctors or nurses were fellow diabetics and felt the care I received would be so different if I had someone who understood what I was dealing with. So, after leaving school I decided to become a registered nurse.
Throughout my life, I've had to deal with a host of different experiences because of my condition, and I know that diabetes can be hard. I wanted to say to people: "Hey, I've been where you are. Let's navigate this together."
I have been a nurse for nearly a decade, working across various different facilities, and I would estimate that over half of my patients had financial issues with their medical costs, including the price of insulin, and could not afford adequate care for their diabetes.
Working with diabetes patients
During my last nursing job, we had one recurring patient who had difficulty understanding the disease. She was 18 years old the first time I saw her and though she was on her parents' medical plan, she could not afford the further costs of her insulin.
This led to her rationing her insulin or just skipping it, trying to control her blood sugar by eating certain meals. But when a diabetic stops taking insulin for a long period of time, they will get sick. She ended up in the hospital a lot, suffering from a lot of different infections and issues with her kidneys.
Back when I first started nursing, I worked in a nursing home that also housed patients who were in recovery after going to hospital. One man who wasn't able to afford his insulin or other medication was routinely placed in our facility after multiple medical amputations, caused by untreated diabetes-related issues.
Nobody should have to lose limbs because they can't afford insulin.
Becoming a diabetes nurse
I am currently studying to become board certified in diabetic education and am hoping in the future to offer free classes to educate people about the condition, because having diabetes is expensive.
This month it was announced that two major pharmaceutical companies will be lowering the price of some of their insulin products. Do I think this will help? Yes. Do I think this is the answer? No.
A 2020 study found that the average price for a vial of insulin in the U.S. was over $98 in 2018. So, is $35 better than that? Yes. However, in my eyes, this is a decision that should have been made by Congress, not pharmaceutical companies.
The patent for insulin was sold for $1. The discoverers of the drug wanted it to be affordable because they knew it was going to save lives. But here we are, 100 years later, and this liquid costs so much that some people are dying.
As diabetics, we need insulin to survive, and I don't believe there's any reason anybody has to have adverse effects of their illness because they cannot cover the financial cost.
Trisha Guess is a registered nurse and mother of six who lives in Germany with her husband. You can visit her website here or follow her on TikTok @the_diabetic_nurse.
All views expressed in this article are the author's own.
As told to Newsweek's My Turn associate editor, Monica Greep.
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