When I was in high school about fifteen years ago, my mother’s blood sugars were high, and she passed out. I had heard her call out and ran to the bathroom, where she was sitting on the edge of the tub with a needle. She suddenly dropped it, her eyes went stiff, and she fell between the toilet and the wall, staring forward. Everything felt squeezed, compressed. I pulled her up, calling her name and brushing her dark hair out of her face. When she regained consciousness a few moments later, she manage to take her needle, full of insulin, and plunge it into her abdomen. “I need to go to the hospital,” she said.
Mom had the autoimmune disease Type 1 diabetes. Since her diagnosis as a teenager, her body had stopped producing the hormone insulin, which is needed to metabolize the glucose in food. Like all individuals with Type 1 diabetes and many people with Type 2, she had to inject synthetic insulin to live. She worked hard to keep her blood sugar levels between 80 and 180 milligrams per deciliter of blood, but she still experienced complications, leading to a partial foot amputation and many trips to the hospital like the one that day. When Mom experienced a high blood sugar, her vision became blurred, she felt the need to urinate, and her mind became jumbled. I don’t know for how long and at what severity she experienced these symptoms.
In a sense, Mom had been lucky, as she had access to the medical marvel of insulin. Suppose you were born before 1923, when insulin became commercially available. If you developed diabetes, you were in trouble. This would be true even if you were white and middle class, and lived in Boston, the ideal place to be if diagnosed with the condition. First, you’d be hit with the symptoms: constant urination, dizziness, double vision, an unquenchable thirst clawing in your mouth, and a tidal wave of nausea. Your parents would carry you to Massachusetts General Hospital. You’d feel terrible, confused, and your breath would smell like fruit because of ketones released from the liver when the body lacks insulin. The nurses would chemically test your urine. If it turned purple, they’d send you to the leading expert on diabetes treatment, Dr. Elliot Joslin.
Joslin, a New Englander molded by a Yale and Harvard education, treated patients in clinics and hospitals around Boston. The thin, balding man with glasses also ran a private practice at his residence on Bay Street. He was known for being kind and taking on cases that other physicians would not. Many of his colleagues thought him endlessly optimistic, even with children who had little chance of survival.
Joslin was a big believer in Dr. Frederick M. Allen’s Starvation Diet, which severely restricted caloric intake to extend life. He would immediately place you on this diet, which he outlined in the 1916 edition of his famous manual, The Treatment of Diabetes Mellitus. After fasting for two or three days in bed, you’d be allowed fifteen grams of carbohydrates. You’d be given vegetables like lettuce or tomatoes that were boiled once or carrots and spinach boiled three times to eliminate the carbohydrates. If lucky, you might get some bran cakes. Your daily caloric intake would not exceed 1000 calories. Even on this stringent regimen, your body would continue to be poisoned.
Without the ability to use glucose in bloodstream, ketones would build up until you reached acidosis, now called Diabetic Ketoacidosis (DKA). You’d probably see other patients under seventy-five pounds who had been diagnosed with diabetes for weeks, months, or, in extraordinary cases, years. You’d see children who could barely move urinating in their clothes, gasping for air, and falling in and out of consciousness. Like them, you would eventually die in excruciating pain.
The Starvation Diet is no longer a suggested treatment, but people with Type 1 diabetes find themselves resorting to its methods to survive. This is because the price of a vial of insulin has increased from $21 in 1996 to over $300. Many people, like Sara Stock of Akron, Iowa, need two to four vials a month. I met Sara through Twitter after noticing her comments, under the hashtag #insulin4all, about struggling to pay for the treatment she needs to live. She told me over the phone that she restricted food for years in order to live. She simply couldn’t afford to eat three meals a day, since this required three doses of insulin. “I was lethargic, I lost like 50 pounds…I looked emaciated,” she explained. “People thought I was on drugs. I looked horrible.” After rationing insulin for some time, her leg became infected. The infection nearly reached the bone and needed to be surgical drained. She also developed a hand infection and contracted Methicillin-resistant Staphylococcus aureus (MRSA).
This was around 2010, when she lost her health insurance and had to pay for insulin out-of-pocket, when it cost around $200. Sara had married soon after high school and had insurance through her husband, but then got divorced. As a stay-at-home mother of three without a post-secondary education, she struggled to find employment that provided adequate income. She worked at a honey factory, a pizza shop, and a dog kennel, but none of these jobs sufficed. She didn’t qualify for Medicaid until 2018.
She was in a constant stasis of hyperglycemia, feeling weak, tired, moody, and thirsty all the time. Sometimes her rational thinking would spiral out of her, and she’d become confused. If she reached a vomiting stage, she knew she needed medical treatment. In these instances, sugar had flooded her bloodstream and led to DKA. If untreated, she’d fall into a coma, pass out, and die, just like Joslin’s patients. But she could not afford a hospital visit, and so would drive over thirty miles in this acute state to a free-of-charge community health clinic.
The providers would “treat and street” her, as there was little else they could do. First, they would pump her full of fluids and hook her up to an IV for eight to twelve hours. When her blood glucose levels were stabilized and DKA was no longer an immediate threat, they would give her a prescription for the insulin she couldn’t afford. So, she’d go back home and continue to ration her insulin.
“I would just try to give myself enough insulin to stay alive basically,” Sara explained. This went on from 2010 to 2017. The worst part about this experience was knowing “that there was a drug out there that could help me. But I couldn’t afford it, you know?”
The price is still ratcheting up, and this is gaining the attention of lawmakers. Recently, U.S. Senator Ron Wyden of Oregon commented on insulin prices during a hearing with the Finance Committee. Why, Wyden asked, is the cost of insulin soaring when there have been only slight improvements to the drug since its breakthrough in the 1920s? “There’s been no recent ‘ah-ha’ moment in a lab to explain why this list price of Eli Lilly’s main insulin drug Humalog went from $21 dollars a vial in 1996 to the current list price of $275,” the lawmaker said. “That is a thirteen-fold increase. Humalog isn’t thirteen times as effective as it used to be. A vial doesn’t last thirteen times longer than it did in 1996.”
Humalog is a fast-acting analog insulin, which since its introduction in 1996, has made diabetes more manageable than ever before, along with long-lasting analogs like Lantus. Analogs allow individuals flexibility with mealtimes and better glucose control. Before analog insulin, NPH and regular human insulin were used. These moved away from the cow and pig pancreas extracts initially used. NPH and regular insulin are still sold and are available over the counter at Walmart for under $30.
But these versions require you to “drastically alter (your) lifestyle, making blood sugar control more irregular and raising A1C scores.” It is especially difficult to dose children, according to Nicki Nichols, who tried to manage her young daughter’s Type 1 diabetes with insulin from Walmart. “(You) must always be sure to eat at specific times. Even if (you’re) not hungry, (you) must eat to avoid low blood sugar. And if (you) are hungry, (you) often cannot have more than the required amount. Quite frankly, this sucks,” says Nichols.
Dr. Robert Osburne, an endocrinologist at the University of Alabama’s College of Community Health Sciences, explains that those who rely on NPH and regular insulin to treat their diabetes will have a much more complicated time using the insulin correctly: “Most people don’t have time or the focus or whatever to be able to follow that complex of a regimen.” These individuals are already encumbered by the task of regulating their blood sugar every minute of the day.
Many doctors won’t even talk about over-the-counter insulin with patients. This may be because they do not have the knowledge to supervise use or because they have heard of patients experiencing severe low blood sugars and having to visit the emergency room while on this treatment. The increased risk of hypoglycemia on these versions is well documented.
I recently went to Walmart and bought some of this insulin. For some reason, I wanted to hold it—this thing that people need and that my Mom once did. It may not be the version that people need and deserve, but it is what I can obtain. There was no line. The clerk pulled the product from the fridge, and I asked, “How much is it?”
“24.88,” she said, not missing a beat. She scanned the box and put it in a plastic bag, the digital display confirming this. “I’m good,” she said. Clearly, it is not the first time she has rung up insulin.
I thought about holding Mom’s body in the bathroom. Feeling the heat of it, the sweat, the pain bundled under her skin. The weight of her.
I walked back to my car, pulled the box from the bag, and opened it. There it was. The size of a Lego piece and weighing no more than a few ounces. Freshly released from the fridge, it was cold, and the milky white serum jiggled inside. I held it in my hand for a long moment, listening to the groan of my car. I thought about holding Mom’s body in the bathroom. Feeling the heat of it, the sweat, the pain bundled under her skin. The weight of her. The transplanted kidney under the scar on her abdomen, the foot amputated from damaged nerves and vessels that couldn’t heal ulcers or prevent infections. The cancer in her intestines, the gastroparesis in her stomach, the hysterectomy, and the pancreas—that small, pink, yellow-gobbed organ that had stopped producing insulin without explanation.
The life in her body. For over a decade, she had helped children and young people with their own failing bodies as an occupational therapist. She had friendships across three states and could start a conversation with anyone. She had raised my sister and me mostly on her own. This body that passed away in 2011 can’t be forgotten. This person can’t be forgotten.
And neither can the seven million Americans—and more around the globe—who depend upon insulin to live. They deserve to live as much as those who don’t depend on the drug. Dr. Joslin once described the life that a patient with diabetes could achieve as “happy and vigorous.” Nearly, one hundred years after the discovery of insulin, many are still struggling to achieve that life. There are thousands suffering like Sara Stock once did. They are struggling to pay for their insulin and struggling to avoid hospital visits and the eventual complications that Mom suffered. For them to achieve a life that’s happy and vigorous, to be healthy, and to have a chance to live, insulin needs to be made affordable and accessible for all who need it.
Photo Credit: Thomas Fisher Memorial Library