I have Type 1 diabetes, and every year, I blow through my $2,200 deductible in less than three weeks. In the last 12 months, my insurance company has covered more than $36,000 in medical costs, all for routine checkups and medications.
And it’s not just the insulin. I wear an insulin pump and a continuous glucose monitor. These devices are scientifically proven to drastically improve diabetes management, yet without insurance, they cost more than $20,000 per year. Despite the fact that I wear the best technology available, I’m still developing diabetic retinopathy in my right eye.
If you read the news, you know that insulin has become so expensive, Type 1 diabetics are dying. I live in Minnesota, where lawmakers attempted to pass a bill this past legislative session to provide free emergency insulin for those who need it. The bill was named after Alec Smith, who died in 2017 after rationing his insulin because he couldn’t afford his $1,300 refill — something 1 in 4 diabetics have done. Despite overwhelming support for the legislation in the House and Senate, the Minnesota Senate killed the bill on May 26 in “the final hours of negotiation.”
When Sir Frederick Banting, MD, discovered insulin a century ago, he knew it had the power to change people’s lives, which is why he said, “Insulin does not belong to me, it belongs to the world.” Unfortunately, these days it belongs to the pharmaceutical industry. The cost of insulin nearly doubled between 2012 and 2016, with the average cost per patient rising to $450 per month. I doubt this is the world Banting envisioned when he sold the patent on insulin for $1 to the University of Toronto.
I’ve often said that the hardest part about having diabetes isn’t the disease itself but dealing with health insurance. I’ve wept, begged and pleaded with insurance companies to adequately cover my supplies, particularly blood glucose monitoring strips.
Yes, the endless calculation of carbohydrates and the constant pricking of needles wear me down. I’ve come close to having seizures in the middle of the night due to low blood sugar. Once, I woke up in the middle of the night drenched in sweat. My blood sugar was 26 mg/dl; I’m supposed to be above 70.
You know what’s harder than all that, though? Fighting for the supplies that keep me alive.
“While living in a perpetual panic was terrifying, the fear of losing my ability to afford insulin was scarier.”
I base all of my life decisions on the ability to afford insulin, even when it’s a detriment to my health.
When I started college at 18, I hadn’t menstruated in months, my hair was falling out, and I was existing on 300 to 600 calories per day. I’d lost 40 pounds, yet I still stood naked in front of the mirror, terrorized by my own distorted view of my emaciated body.
On Nov. 16, 2008, my mom took me to what I thought was a routine doctor’s appointment. Instead, an MD, nutritionist and psychiatrist entered the room. The doctor examined my ankles and my temples, looked me in the eyes, and said, “If you keep doing this, you’re going to die.” An electrocardiogram revealed that I’d developed cardiac arrhythmia. My body was working so hard to keep me alive that it had started to eliminate less “necessary” forms of caloric consumption, such as menstruating and maintaining a full head of hair. My organs were starting to shut down.
I was diagnosed with anorexia nervosa and hospitalized. Even though I wanted to take a leave of absence from school, I didn’t. I was attending Mills College in Oakland, California, on a music performance scholarship, and without that financial aid, I wouldn’t be able to afford treatment for the eating disorder, let alone insulin. I needed health insurance. I needed insulin.
Since then, I’ve continued to base all academic and professional decisions on my ability to afford my arsenal of life-saving equipment. I stay at jobs longer than I want to, and I work through debilitating mental health conditions.
About a month after I started my recovery from anorexia, I had to perform at a recital. I sang Mozart’s “Smanie implacabili” from his opera “Così Fan Tutte” — the title translates to “women are like that.” In the aria, Dorabella sings, “I hate the light, I hate the air I breathe, I hate myself!” The words couldn’t have been more fitting; I had just started menstruating again, but I was still incredibly weak. There’s an old, grainy video of this performance. Somehow, I was able to produce ample sound from an emaciated frame, but I gasped for air. I hated the spotlight of performing. I hated the fact that I could barely breathe. I hated myself. But I needed health insurance. I needed insulin. And so I grabbed the piano, braced myself and forced out a high G.
While I’ve been in remission from anorexia since college, I developed agoraphobia at 23. For several years, I was unable to drive in the left lane or on the freeway, take elevators, or travel more than five miles from my home without having a panic attack. Once, I single-handedly prevented a plane from taking off because I had such a severe panic attack. I never made it to my final destination of Arizona, where I was supposed to attend my grandmother’s funeral.
For years, my agoraphobia also made work nearly impossible. I’d white-knuckle my way through staff meetings, hoping I wouldn’t start hyperventilating in front of the boss. I’d sweat through commuting on backroads, gulping down air as I listened to self-help audiobooks in hopes of soothing myself. I avoided left turns, managed to show up to work each day and then wept in the bathroom hundreds of times. While living in a perpetual panic was terrifying, the fear of losing my ability to afford insulin was scarier.
I’ve wanted to attend graduate school for years. I was accepted to several schools, including Tulane University, in 2015. Despite the promise of health insurance provided by the university, I feared the paperwork wouldn’t go through or I’d face an unaffordable deductible. And what would happen once I graduated? Would I find a job that could cover my $36,000 in medical supplies? I declined the offers but held onto my dream. I finally pushed my fears aside — this fall, I’ll be attending graduate school to pursue a master’s degree in social work. Still, there’s that forever-echoing refrain in my mind: You need health insurance. You need insulin.
I’m resentful of the way my need for access to affordable insulin has dictated my life choices.
I’m resentful of the lawmakers who control the fate of people with Type 1 diabetes. I’m infuriated and, more than anything, terrified. The high price of insulin leaves the vulnerable so reliant on their jobs, they can’t afford to leave, even for safety reasons. It drives people to ration insulin and risk death from diabetic ketoacidosis. When lawmakers fail to ensure access to affordable insulin, do they weigh the cost of our lives?
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