The price of insulin controls my life. Legislators in my state do not worry.

I have type 1 diabetes and every year my $ 2,200 deductible is exceeded in less than three weeks. In the past 12 months, my insurance company has covered over $ 36,000 in medical expenses, all for routine examinations and medications.

And it's not just insulin. I wear an insulin pump and a blood glucose meter continuously. It has been scientifically proven that these devices dramatically improve the management of diabetes. Yet, without insurance, they cost more than $ 20,000 a year. Despite having the best available technology, I continue to develop diabetic retinopathy in my right eye.

If you read the news, you know that insulin has become so expensive that type 1 diabetics are dying. I live in Minnesota, where lawmakers have been trying to pass a bill during the last legislature to provide free emergency insulin to those who need it. The bill is named after Alec Smith, who died in 2017 after rationing his insulin, as he could not afford a $ 1,300 refill, which was done by one in four diabetics. Despite the overwhelming support of the bill in the House and Senate, the Minnesota Senate killed him on May 26 "in the final hours of the negotiations."

When Sir Frederick Banting, a physician, discovered insulin a century ago, he knew that it had the power to change people's lives. That's why he said: "Insulin does not belong to me, it belongs to the world". belongs to the pharmaceutical industry. The cost of insulin has almost doubled between 2012 and 2016, the average cost per patient reaching $ 450 per month. I doubt that this is the world imagined by Banting when he sold the $ 1 insulin patent to the University of Toronto.

I have often said that diabetes is the most difficult task that is not the disease itself, but health insurance. I cried, begged and implored the insurance companies to properly cover my supplies, especially the blood glucose test strips.

Yes, the endless calculation of carbohydrates and the constant puncture of needles make me tired. I am about to have seizures in the middle of the night because of low blood sugar. Once, I woke up in the middle of the night, soaked in sweat. My blood sugar was 26 mg / dl; I am supposed to be over 70 years old.

You know what's more difficult than all that? Fight for the supplies that keep me alive.

All decisions in my life are based on the ability to pay for insulin, even if it hurts my health.

When I started university at age 18, I had not had my period for months, my hair was falling and I had 300 to 600 calories a day. I had lost 20 pounds, but I was still standing naked in front of the mirror, terrorized by my own distorted view of my emaciated body.

On November 16, 2008, my mother took me to what I thought was a regular appointment with a doctor. Instead, a doctor, a nutritionist and a psychiatrist entered the room. The doctor looked at my ankles and my temples, looked me in the eyes and said, "If you keep doing that, you will die." An electrocardiogram revealed that I had developed a cardiac arrhythmia . My body was working so hard to keep me alive that it had begun to eliminate the less "necessary" forms of caloric consumption, such as menstruation and the maintenance of thick hair. My organs began to close.

I was diagnosed with anorexia nervosa and hospitalized. Even though I wanted to go on school leave, I did not do it. I attended Mills College in Oakland, California, with a music performance bursary, and without this financial aid, I would not be able to afford treatment for the eating disorder, not to mention insulin. I needed a health insurance. I needed insulin.

Since then, I have continued to base all academic and professional decisions on my ability to pay for my arsenal of life-saving equipment. I stay at work longer than I want and suffer from debilitating mental health issues.

About a month after I started recovering from anorexia, I had to perform at a recital. I sang Mozart's "Smanie implacabili" in 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 that I breathe, I hate myself! "The words could not have been more appropriate; I had just started having my period again, but I was still incredibly weak. There is an old grainy video of this performance. In one way or another, I was able to produce a full sound from an emaciated frame, but I gasped from the air. I hated the spotlight of the performance. I hated the fact that I could barely breathe. I hated myself. But I needed a health insurance. I needed insulin. And then I grabbed the piano, got ready and forced a high G.

While I am in remission of anorexia since middle school, I developed an agoraphobia at 23 years old. For many years, I was unable to drive in the left lane or highway, take elevators or travel more than five miles from home without a panic attack. Once I stopped a plane from taking off because I had such a severe panic attack. I never made it to my final destination in Arizona, where I had to attend my grandmother's funeral.

For years, my agoraphobia has also made work almost impossible. I started bumping into staff meetings, hoping I would not start hyperventilating in front of the boss. I was sweating by the comings and goings, I breathed listening to self-help audio books in the hope of calming me down. I avoided turning left, I managed to get to work every day, and then cried hundreds of times in the bathroom. While I was living in a perpetual panic was terrifying, the fear of losing my ability to pay insulin was more frightening.

I wanted to go to graduate school for years. I was accepted in several schools, including at Tulane University in 2015. Despite the promises of health insurance provided by the university, I was afraid that the paperwork would not pass or I would have to do faced with an unaffordable franchise. And what would happen once my degree obtained? Would I find a job that could cover my $ 36,000 in medical supplies? I declined the offers but I kept my dream. I finally rejected my fears – this fall, I will be going to graduate school to pursue a master's degree in social work. Yet there is this chorus that always resonates in my mind: You need health insurance. You need insulin.

I am irritated by the way my need for access to affordable insulin has dictated my lifestyle choices.

I am angry at the lawmakers who control the plight of people with type 1 diabetes. I am furious and, most of all, terrified. The high price of insulin makes vulnerable people so dependent on their jobs that they can not afford to leave, even for security reasons. It causes people to ration their insulin and risk death from diabetic ketoacidosis. When legislators fail to guarantee access to affordable insulin, do they weigh the cost of our lives?

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