Sunday, 26 May 2019
BREAKING NEWS

Living with Type 1 Diabetes When You Can’t Afford Insulin – The New Yorker

In 1921, the Canadian scientist and physician Frederick Banting found that a protein isolated from the pancreas of dogs could lower blood sugar in human beings. “Insulin does not belong to me, it belongs to the world,” Banting, who sold the patent rights to his discovery to the University of Toronto for one dollar, enabling its widespread distribution, said. Before this breakthrough, physicians often recommended a near-starvation diet for children with Type 1 diabetes; one of Banting’s first insulin patients, a teen-age girl who had survived on extreme caloric restriction and weighed a mere forty-five pounds, began to thrive when given access to the medication, gained weight, and lived to the age of seventy-three.

In the early nineteen-eighties, the pharmaceutical company Eli Lilly pioneered the manufacture of human insulin using recombinant DNA. Since then, Eli Lilly, as well as Sanofi and Novo Nordisk, have developed modifications of insulin, including longer- and shorter-acting versions. But the price of insulin has unaccountably surged. Between 2012 and 2016, it doubled in the United States, so that today it can cost diabetics as much as a thousand dollars a month. Eli Lilly in particular more than doubled the price of its blockbuster insulin analogue, Humalog, during the tenure of Alex Azar, who was then president of the company and is now President Trump’s Secretary of Health and Human Services. Roughly a quarter of people with diabetes take less than the amount of insulin they are prescribed because the drug is so expensive.

Sa’Ra Skipper, a twenty-three-old native of Indiana who lives not far from Eli Lilly’s global headquarters, in Indianapolis, is one of the millions of Type 1 diabetics who face this life-threatening bind. For years she has rationed insulin supplies, tried to limit her food intake, and shared medication with her younger sister, who also has the disease. She has also paid attention as rising drug prices have become more prominent as a political issue: the House Committee on Oversight and Reform has launched an investigation of skyrocketing drug prices, and the Senate Finance Committee will convene hearings on drug pricing next Tuesday. One congressional aim is to increase transparency around discounts and rebates, which primarily benefit intermediaries such as pharmacy-benefit managers rather than patients like Skipper, because companies use discounts and rebates to compete with each other rather than competing on the list price of the drug.

Skipper recently spoke to me about how the pursuit of insulin has shaped her life; her account, which is taken from two conversations, has been edited and condensed.

“I was diagnosed with diabetes when I was five years old. But I only started having problems getting insulin in 2008, during the recession, when I was eleven and twelve. My mom and my dad divorced around that time. My mom also took a buyout from her job at G.M. She worked on the line, building Cadillacs. After the buyout, she took whatever odd jobs she could find. We moved from Michigan to Indiana, where she was from, and she got insulin for me and my sister by going through patient-assistance programs, and getting samples from my doctor and people at our church. She missed a lot of work making sure we were O.K.

“My worst experience was when I was in college, at Vincennes University, three hours from home. My pediatrician was still giving me samples, but at a certain point I aged out. I remember my freshman year, in 2014, after winter break, I picked up a package from her and there was a note saying it was the last time she could send me anything. I didn’t know what was going to come next. I was so scared. When I was a baby, my mom’s sister passed away from Type 1 diabetes, and my whole life that has been in the back of my mind: I don’t want to end up like Aunt Joy. My sister was in Virginia during that time, so she would mail me insulin when she had some to spare, and when she ran low, my grandparents would have to pay cash for hers.

“I lost a lot of weight that year, about twenty pounds. When you don’t have insulin, you can’t eat much because you can’t correct your blood sugar. So I was barely eating. I was supposed to take four to five shots of insulin a day, and I was only taking two to three. I was lethargic all the time. I was rationing just so I could live. I knew if I ran out I wouldn’t survive more than a few days. That took a mental toll. My professors knew my situation, but I would spend class either in the bathroom or asleep, so they were not very sympathetic. I ended up just coming home.

“Now I work at a call center. I have Blue Cross Blue Shield insurance through my job, and I can go to a primary-care doctor and an endocrinologist. But, even with insurance, my insulin costs a thousand dollars for a thirty-day supply. I can’t tell you the last time I was able to fill a prescription. I get samples from my endocrinologist. My sister also gets free insulin through a health center, because her income is lower than mine. So we’ve been sharing that.

“When my blood sugar is high, I’m dizzy and nauseous, and I just want to feel better. When my sugar drops low, I’m told that I get combative and sometimes pass out. One time, I was at my mom’s house and she heard something fall. She came upstairs and I was standing in the middle of the room like something from a scary movie. I had this look in my eyes like I was completely tuned out. I have no memory of that, none. I was into bedazzling at the time, and she said I started coming at her and throwing my bedazzling things. She tried to get me to lay down on the bed. When I woke up, there were four ambulance people, firemen, my mom, my neighbor, my boyfriend, all surrounding me like, ‘Hey, welcome back. Are you O.K.?’ I had all these bedazzled jewels on my stomach and in my belly button and all over. It was just wild.

“Last summer, my sister and I were living at my mom’s house, and one night we got our wires crossed. She was out late, and I took my ration dose and put the rest of the vial on the nightstand so she would see it. When she came in, she only took part of what was left, because she didn’t realize I had gotten some already. In the morning she went into diabetic ketoacidosis. She turned green and was throwing up and her sugar was through the roof. I drove her to the hospital, straight to the E.R. She had to get a [P.I.C.C. line] in her neck. She almost went into a diabetic coma. She was in the hospital for four days, and all because we were sharing insulin.

“Nobody deserves to die because they can’t afford their medication, but it’s easy for me to see how that can happen. Since December, I’ve been working with the Kentucky-Ohio-Indiana chapter of Insulin4All raising awareness about the high cost of insulin and