by Rachel Roberts
Sept. 6, 2019
Your body killed your pancreas. Well, at least the part of it that provides insulin beta-cells. Whether because of its dysfunction or because your other organs received mixed signals and mistakenly attacked it, now the important cells are gone. Your body went about its kill-job, and now you now lack insulin: a hormone that regulates your blood glucose levels. Unregulated blood sugar is dangerous and can cause serious medical problems including hypoglycemia, and death. This makes you a diabetic.
Now that you’re a diabetic, you assimilate to the lifestyle of one. These transitions aren’t always easy. Your diet will probably change. Your fingers become bruised from the daily pricking. You prick your toes instead. You prick and prick so that you know your glucose levels. You budget in needles, a pen, testing strips and a monitor. If it’s low, you need sugar in the form of juice, or candies like Skittles or Smarties. High concentrated sugar is a necessity, so it goes on the grocery list. If your levels are high, you roll up your sleeve, pant leg, or shirt and inject insulin, which also has a price tag. That is, unless you have a pump. A pump also allows you to regulate your intake of insulin electronically through a site attached to your body, like a tail or a limb with dollar signs. A pump might be a burden for you, so you take shots instead. Whether you use a syringe or a pen, the style is up to you. That might complete your supplies shopping cart.
Your gear is your insulin vials, needles, syringes and sugar supply. On a good day, you whip out your needles and insulin before meals – maybe three or four times a day. On a bad day, you’ve checked your blood sugar, chugged a few juices boxes, spiked your sugar levels up, and then made seven or eight separate injections of insulin in an attempt to get back on track. Every day is different, but this is your routine.
Without insulin your body will begin consuming its own muscle and fat as a coping mechanism. This can only last so long. Within 24-hours to five days, your body will eventually shut down, and you will die. If the physical burden of diabetes isn’t enough, all of these necessary steps you’ve incorporated into your lifestyle come with dollar signs as well.
In the last 15 years, those expenses have soared, leaving many diabetics unable to afford to keep their bodies functioning. What once was $22 has increased to nearly $500 since 2002 for uninsured diabetics, according to Dr. Adam Maass, an endocrinologist at Mercy Hospital in Rogers. While insured diabetics still pay out of pocket for vials that come with hefty copays, uninsured diabetics must continue to make sacrifices in order to budget in the hormone they can’t live without.
In 2012, the average medical expenses for a diabetic were about $13,700 per year, according to a National Diabetes Report released by the Centers for Disease Control and Prevention. Since 2012, the cost of insulin from manufacturers like Novo Nordisk increased from $120.64 to $293.75 in 2018, according to a Minnesota lawsuit.
Although diabetes is a manageable illness, there is no cure. When the only life sustaining option is an insulin vial that you can’t afford, you panic.
•••
Sipping on a Dr. Pepper on an April afternoon in her Fayetteville home, Jordan Gershon, 22, checked her phone to see a notification that her blood glucose level was at 80, a typical low for her. The Dexcom application on her phone sounded a brash siren that she quickly dismissed because she already knew she was low. She could feel it.
Gershon was diagnosed seven weeks into her freshman year at the UofA. The Fayetteville local was 18 years old and experiencing what she calls the “classic symptoms,” which included dropping 30 pounds, ceaseless thirst and dehydration, the diet of a teenage boy but with no weight gain, frequent urination during the day and night, and constant fatigue. It wasn’t until one day, standing in her kitchen, that she realized she couldn’t read a clock on the wall. Her vision was gradually worsening so she drove herself to the emergency room, where she discovered her blood glucose was at 688 and her A1C was 15. A healthy blood sugar can range from 90-110, whereas a safe A1C is about 6. The doctors told her that she had an 80% chance of dying had she not come in that day.
Now from her pant leg, her pump site is noticeably adjusted on the outside of her right calf. It’s a wireless pump connected to a remote, which is how she controls her insulin intake. A different site is covered by her shirt sleeve on her right bicep. This device is a wireless monitor for her blood sugar connected to the app on her phone through Dexcom technology, a diabetic supplies manufacturer and distributor. Both devices help her from having to stick herself with needles constantly and allow her to manage her diabetes with less anxiety. Because Gershon is 22 years old, she still qualifies for her parents’ insurance. Her two technologies are not covered by most insurance companies who consider the wireless features a luxury.
“A pump is not a luxury,” Gershon argues. “Diabetes is not a luxury. I never asked for this.”
Jordan Gershon, 22, stands at her refrigerator with her back-up insulin pens at hand. “I rely on technology so much, but that can alway fail,” she said in reference to her wireless monitors, which track her blood sugar and insulin intake. “They are my lifelines, but they have flaws.” Photo by Rachel Roberts
Generally, Gershon likes her insurance, but there is still a $4,000 deductible to be met before her medicine isn’t considered a financial burden. Before having hit her deductible, Gershon went to her pharmacy to pick up three vials of insulin, which would normally last her about a month. She began crying at the window, when the pharmacist told her it would be $850, a price tag she could not afford to pay out of pocket. So, she walked away with no insulin. She used extra vials that she saved up from the summer until her deductible was met, and she could go get insulin with no fee.
Because of the continuous problem that both insured and uninsured diabetics face when trying to obtain their life-sustaining drug, it is common for diabetics to resort to buying from the black market, skipping doses, reducing their daily units, starving themselves to use less insulin and using expired insulin, which would be ineffective or lead to the shutdown of bodily functions. T1International, an advocacy group for Type 1 diabetes, has been witness to this issue and uses the hashtag “#insulin4all” as their mission statement.
Financial insecurities monopolize prices and trouble diabetics seeking insulin. Because insulin is a necessity, the increase in price means diabetics must go to whatever lengths necessary in order to save their own lives.
Gershon fears that if something ever happened that would compromise her father’s employment, she would lose access to her insurance. Even if nothing goes wrong with her parents’ insurance, she still worries for the day she turns 26 and is no longer eligible for her parents’ insurance.
“I’ll always have to have a job with good insurance,” she says.
Gershon’s nightstand is three drawers full with diabetic necessities, in the case that she wakes up at night to find her blood sugar spiked. “It’s so unpredictable,” she said. “I can do everything right and still be high or low.” Photo by Rachel Roberts
Every day Gershon plays the role of her pancreas. Every day she saves her own life.
•••
About 15% of the adult population in Arkansas live with diabetes, according to the American Diabetes Association. In 2012, the total direct medical expenses for diabetics in Arkansas, whether diagnosed, undiagnosed, pre-diabetes or gestational diabetes, was estimated at $2.3 billion. The heavy costs affect diabetic southerners like Gershon.
Shane Patrick Boyle from Mena, Arkansas died March 18, 2017 because he was short $50 to pay for his insulin. Less than a month before his death, he sent a link to his GoFundMe page via twitter asking his followers to donate to his insulin allowance. Although his goal was not met in time, his death and tweet have caught the attention of hundreds and revealed the realities of this issue.
Diabetes is the seventh most common cause of death in Arkansas with a mortality rate of nearly 33%, according to a 2017 survey released by the CDC. The prevalence of diabetes in Arkansas puts the state in third place among the nation’s diabetic mortality rates. Mississippi ranks second with a rate of 33% and West Virginia takes first place with a mortality rate of roughly 34%.
Although the issue of access to insulin works parallel in the heavy prevalence of diabetes rates in the South, the issue is not exclusive to those regions. Diabetics across the nation face the same challenges of affording insulin and are forced to get creative with their means of obtaining it.
Alec Smith from Minnesota was found in his apartment on June 27, 2017. His official cause of death was Diabetic Ketoacidosis—a result of rationing his insulin.
“Alec was limiting his insulin without my knowledge, he did this because without insurance the cost of insulin and diabetic supplies per month was $1,300,” Alec’s mother, Nicole Smith-Holt, said.
Alec had aged out of his parent’s insurance on June 1, 2017 after turning 26 in May.
“I think it is important to share that the increased price of insulin is not only affecting those without insurance but even those with insurance are having a hard time,” Smith-Holt said. “Often they are facing high deductibles and paying thousands of dollars out of pocket— paying full list price for many months until they meet their deductible, forcing many families to make many sacrifices just to keep their loved one alive.”
After the loss of her son, Smith-Holt and her family have dedicated their lives to advocating for other type 1 diabetics. Their focus is to make insulin affordable for all regardless of their financial situation. Joining in on the #insulin4all movement has been a way for Smith-Holt to advocate and bring awareness to the issue.
The American Diabetes Association created a platform that petitions for the three main insulin manufacturers, Novo Nordisk, Eli Lilly and Sanofi-Aventis, to communicate transparency in pricing, to guarantee that no diabetic is denied affordable access to insulin.
The ADA also asks that Congress holds hearings with these insulin providers in order to identify the reasons for the increases and take action so that people who need insulin can get it. Their overall mission is to make access to insulin affordable through sharing stories, signing petitions and bringing awareness to the issue.
The problem of affordability has reached the American Diabetes Association, which has gathered testimonials on its website:
“This past year I was paying more than $700 per month for my Humalog. This ‘cost of staying alive’ represents 59% of my monthly mortgage payment and 143% of my monthly insurance premium. I know that pharmaceutical companies spend large sums of money on research and development for new and existing drugs. Why does a drug that has been in the market for such a long time, continue to sell at an extremely high cost?” – Michael K.
“My first year with type 1 diabetes was 2012, and I had a $40 copay for three months and could choose any insulins available. Today I pay full price ($350-$500) per box of pens up to my deductible of $6000 ($12000 next year). Same employer, same insurance company through it all. It changes almost everything… Next year I will be breaking the law and buying my insulin in other countries. Even with travel, it’s much less expensive than buying it with insurance. Next year the $12,000 deductible is going to be even more difficult.” – Anonymous
“My kids, age four and six, would love to go to Disney World. Instead of Disney, we go to Canada every year to buy insulin for our four-year-old. I guess Elsa and Anna at the Phoenix Children’s Hospital will have to do.” –Shawn H.
•••
In Dan Carr’s Chicago apartment, an unwashed plate waits in the sink with veins of strawberry vinaigrette running through the leftover scraps from his chicken and salad dinner. It’s the same menu he’s kept almost every night of law school because it regulates his blood sugar and he knows exactly how many clicks of insulin to give himself after the meal: three. He calls it a simple meal.
His fridge is stocked with two- or three-month supplies of little frosted-flasks holding the insulin he got from a doctor in China. He’s been living off that supply for nearly a year and knows that sooner or later he’ll have to figure out what Medicaid will cover for his type-1 diabetic expenses.
Carr, 31, discovered his chronic illness 10 years ago when finishing his undergraduate degree. He was still on his parent’s health insurance before moving to South Korea for six years, where health care and his medicine were both affordably accessible. When he moved back to the states at 26 years old, Carr realized he was no longer eligible for his parents’ insurance. He soon found that an appointment to see his endocrinologist would be a stifling price of roughly $250, not including his prescriptions. After calculating the sum of a doctor’s appointment, a month’s worth of insulin, needles, and the rest of his supplies, he figured flying back to South Korea to get insulin would be cheaper than trying to attain it in the U.S.
“A doctor’s visit in America would be more than three vials of insulin in Korea,” Carr said. “It’s a business more than it’s a healthcare system.”
By 2016, Carr still had no income, insurance or insulin. So, he decided to move to China for a new job. There he met his wife and started a new job that refunded him for every doctor’s visit or medication he had to pay for out-of-pocket during his visit. After working in China a couple of years, he was accepted to law school in the states at DePaul university in Chicago. He worked out a deal with his Chinese doctor to prescribe him the maximum amount of insulin he could receive throughout each visit in order for Carr to take back to the U.S. Using the luggage room of his parents and wife, he smuggled back about 65 vials of insulin to the states. Since then he’s been harvesting tiny, clouded bottles in his fridge and clicking his insulin pen to the precise amount needed. Carr is not sure where his next insulin vial will come from, so he holds on to what he has left.
On this night in March, Carr clicks his insulin pen for the third time and sticks himself in the butt, the area with the most fat on his body. He has only checked his blood sugar a couple of times before this, which he knows is dangerous and could only worsen his diabetic condition, but he’s out of options. Testing strips equal dollar signs to him. They’re not a prescription, but they can still rack up a price tag when used as often as recommended. Carr is already running low on testing strips, and he knows that when he’s out, he’ll have to ride an hour-long train ride to the nearest Sam’s Club, where he’s found the cheapest brand. It’s an inconvenience. So, he resorts to checking his blood less often in order to save his testing strips. He selects how many insulin-clicks he needs based on how he’s feeling or what food he’s consumed; hence the mundane dinner menu.This is why he must stick to a rigid meal plan.
Diabetics usually check their blood sugar before giving themselves a shot or eating any meal. Roughly seven times a day, they prick their fingers and squeeze a bead of blood onto a testing strip that will assess its glucose level. After doing so, most diabetics calibrate their insulin intake before giving themselves a shot—not Carr.
When Carr’s Chinese insulin stock finally runs out, which he knows will be soon, he can’t afford to fly back and restock. His Medicaid will have to be sorted out, and an appointment with a primary physician will be a bill he dreads. It’s a task he’s avoided for eight years, but anymore reluctance and he risks the chance of dying. Rationing his insulin and injecting it without knowing his blood glucose level means that his body is not getting the precise treatment it needs.
Carr’s lifestyle is only one example of the sacrifices that many diabetics must make in order to afford life-sustaining medicine, but it is a reality. In South Korea or China, he found that having a disease and needing medicine meant the pharmacists and doctors were there to help him get what he needed, despite his ability to afford it. In the states it is a different story.
He sets the insulin pen down and goes back to a desk occupied by his study materials. It’s midterms week, and stress causes his blood glucose levels to spike. He doesn’t have to check to know.
•••
Although it is easy for diabetics to panic when they realize their life-line may be out of reach, there still remain advocates. Endocrinologist Adam Maas’ goal in treating his diabetic patients is to give them hope and educate them on how to manage their disease. When he first started practicing medicine, the cost of insulin was about $80 per vial, and insulin pens were about $100. Now Maass sees insulin prices range from $250 to $400, and the cost of pens are roughly $300. The clinic where he resides is a nonprofit that aims to meet every patient’s needs as far as obtaining insulin, needles, testing strips, and other supplies. He is known among patients for going to great lengths to provide insulin and treatment to diabetics no matter their financial situation.
“I will always see someone regardless of their ability to pay,” Dr. Maass said.
His office is decorated with an entire corner devoted to backpacks with the Juvenile Diabetic Research Foundation (JDRF) logo on the front, boxes of supplies and medicine, and artwork from a patient that reads, “Thank You For Helping Us Understand Type 1.”
Whether giving patients discount codes to redeem at the pharmacy that lessen the cost of their insulin or making sure they walk away with whatever supplies they need, Dr. Maass wants to give his patients confidence that diabetes is manageable, while putting an end to the fear of it controlling or killing them. Patients can find relief from their financial insecurities.
“There is a perception that there isn’t access to care, but in our community that’s not a reality,” Dr. Maass said. “It’s those assumptions that get (diabetics) into difficult places.”
Non-profit organizations like Mercy Hospital, Juvenile Diabetes Research Foundation (JDRF), ADA and others are outlets for diabetics to find relief in accessing their treatment.
Another resource that is often overlooked is the protection diabetics have from the American Disabilities Act. Gershon says that she has had to voice and defend her rights as a diabetic on many occasions because often she has found people who know nothing about the disease are her biggest obstacles.
“You have to advocate for yourself because no one else will do it for you,” she said.
•••
Recently, Eli Lilly dropped the price of its best-selling insulin brand, Humalog, that would normally sell for about $275 to half off at $137.35. Although the price is still high, considering the weight of the rest of a diabetic’s necessary supplies, their decision to decrease prices might spark change in the pharmaceutical industry.
“Solutions that lower the cost of insulin at the pharmacy have been introduced in recent months, but more people need help,” said David A. Ricks, the company’s chief executive, in a public statement. “We’re eager to bring forward a low-priced rapid-acting insulin.”
A hearing began April 10 in Congress, where JDRF chief officer Aaron J. Kowalski testified on the impact of rising insulin costs before the U.S. House of Representatives Committee.
“I told Congress that no one should suffer or die because they cannot access insulin,” Kowalski said in a letter to JDRF supporters. “At a time when new innovations can enable people with type 1 diabetes to live longer, healthier lives than ever before, the dramatic rise in the cost of insulin is undercutting this progress.”
Gershon also notes that while insulin is a life-sustaining drug, another life-saver is having a community. She joined College Diabetics Network when it came to the University of Arkansas in 2018 and now leads the nonprofit organization. Its goal is to put local diabetics in a community where they can find comfort and familiarity in their struggles and help each other out.
The group doesn’t focus on strictly-diabetic conversations, Gershon says. They are college kids who have found familiarity and comfort in the company of people who understand their disease. To have a tribe of people who share her anxieties, know what she’s going through and listen to her frustrations is how Gershon is able to keep a positive attitude while handling her diabetic lifestyle.
“I didn’t realize how strong I could be until it was the only option I had,” she said.