2 Can You Afford to Survive? The Diabetes Diagnosis

About the Author

Michelle Bartlett grew up in Tri-Cities, Washington where she spent much of her time dancing, playing the viola, and reading. Michelle is now attending USU where she is majoring in History with an emphasis in Teaching and minoring in Psychology Teaching and Geography Teaching.

This essay was composed in April 2022 and uses MLA documentation.

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AS OF 2022, SYNTHETIC INSULIN is one of the most expensive liquids on Earth. Listed at $9,400 per gallon, it is the seventh most expensive behind liquids such as horseshoe crab blood and LSD (RankRed). Of the top 10 most expensive liquids, insulin is the only one that some people need to keep themselves alive. Without insulin, millions worldwide will die, and it is one of the most expensive liquids in the world. In the United States, many people with diabetes, too many, are paying thousands of dollars every month to afford the insulin they need to survive. Despite efforts from the government and individual companies, this issue is devastating lives and needs to be addressed.

To better understand this issue, it is important first to understand what diabetes is and why insulin is necessary. In an article from the Centers for Disease Control and Prevention, a reliable and reputable source that provides information on a wide span of diseases, the author goes through the basics of diabetes and provides a substantial background to understand the issue of the necessity of insulin. Simply put, “Diabetes… affects how your body turns food into energy” (Centers for Disease Control and Prevention). For a person with diabetes, their body either cannot properly make or cannot properly use its insulin, which allows the body to use its sugar and convert it into energy. While there is no cure, diabetes, “the seventh leading cause of death in the United States,” can be managed through medication, healthy eating, and exercise (Centers for Disease Control and Prevention).

Type 1 Diabetes, affecting 5-10% of diabetics, is an autoimmune reaction that prevents the pancreas from producing the necessary insulin. Type 2 Diabetes, affecting 90-95% of diabetics, prevents the body from using the insulin it produces and is most often associated with unhealthy weight and lifestyle. Contrary to Type 1, typically diagnosed in childhood and adolescence, Type 2 is primarily diagnosed in adults with an increasingly young population. There are approximately 37.3 million people with diabetes in the United States and approximately 1.6 million people with Type 1 Diabetes in the United States (Centers for Disease Control and Prevention, Juvenile Diabetes Research Foundation). Along with Type 1 and Type 2 Diabetes, Gestational Diabetes can also exist during pregnancy. As with the other types of diabetes, the body of a person with gestational diabetes cannot properly use its insulin, resulting in high blood sugars (Mayo Clinic). All Type 1 Diabetics require prescribed insulin and some Type 2 Diabetics (EndocrineWeb). This argument will focus on Type 1 Diabetics because, as previously mentioned, all Type 1 Diabetics need insulin to survive.

Insulin is a necessary hormone produced by the pancreas in normally functioning bodies that controls the amount of glucose in your bloodstream at any given moment… helps store glucose in your liver, fat, and muscles… [and] regulates your body’s metabolism of carbohydrates, fats, and proteins. (EndocrineWeb)

Without insulin function, the amount of glucose in the bloodstream cannot be controlled, and the body’s metabolism cannot be regulated. When the body intakes carbohydrates, fats, and protein through eating, the pancreas releases insulin that absorbs the sugar and allows it to be transformed into energy for the body to use. In the bodies of non-diabetics, specifically non-Type 1 Diabetics, the islets of Langerhans, cells on the pancreas, produce this insulin and the stimulant hormone, glucagon, which stimulates the liver to produce more sugar. The islets of Langerhans of Type 1 Diabetics no longer function, and the diabetic is now responsible for providing the body with insulin and glucagon when necessary.

When a person with diabetes goes without insulin or has insufficient amounts of insulin, the body begins to go into diabetic ketoacidosis, or DKA, a severe medical condition that requires immediate treatment. The body resorts to breaking down the body’s fat for energy because of the lack of insulin. Without insulin production or injection of synthetic insulin over an extended period, the body will die. On this, Dr. Silvio Inzucchi, “clinical director of the Yale Diabetes Center,” said

I will see that in someone with 0% insulin production, they’ll begin to fall ill within 12-24 hours after their last insulin injection, depending on its duration of effect. Within 24-48 hours they’ll be in DKA. Beyond that, mortal outcomes would likely occur within days to perhaps a week or two. But I could not see someone surviving much longer than that. (Healthline)

When diabetics cannot afford their insulin and run out of the insulin they need, it is only a matter of hours before they begin to feel the effects. This is not a situation where they can go about their lives feeling slightly ill for a week or two before they can afford their insulin again. It is a matter of life and death.

When scientists discovered the link between diabetes and damaged insulin-producing cells in 1808, they began working on another source of insulin. Their original solution was insulin from cattle and pigs. After it was proven to work in diabetics, it began to be produced and sold in mass quantities. Of course, this new medication came with some side effects that were less than ideal, such as allergic reactions to the drug. Over time, the drug was made safer, but a better solution was still needed. In the 1970s, scientists discovered a way to produce synthetic insulin through recombinant DNA technology. In the case of many other new medications, the companies making it will leave the cheaper and more accessible animal-based products on the market while they introduce the newer and more advanced medications. With insulin, however, this was not the case. Once this new technology was produced, the original animal insulin practically disappeared off the market. While it can be found in some other countries, such as Canada, it cannot be found in the United States. Diabetics in the United States, an estimated 29 million, are left with the option of buying the expensive and more recently developed technology (National Public Radio).

In an article by The Lancet, a website dedicated to maintaining the “highest standards for medical science,” the author reviews the beginnings of insulin production and the early competition in the market (The Lancet). Eli Lilly’s insulin prices in 1923 were a mere 3.5% of what they were by 1942. The three companies that produced insulin on the market at the time, Eli Lilly & Co, Sharp and Dohme Inc, and E. R. Squibb & Sons, as well as their executives, were charged with violation of the Sherman Antitrust Act, prohibiting “activities that restrict interstate commerce and competition in the marketplace,” in July of 1941 because of their price-fixing of insulin (Cornell Law School). By 1946 however, the prices had already risen another 50%. The companies justified this rise with the increasing prices of cattle and pig pancreases, but many speculated that profit gain was the primary culprit (The Lancet).

Now, a three-part oligopoly controls the insulin production industry. An oligopoly is when only a few businesses or corporations have complete or almost complete control over an industry. These three companies, Novo Nordisk, Sanofi, and Eli Lilly & Co, control 96% of the insulin industry by volume and 99% by value (The Lancet).

According to a FiercePharma article written by author Beth Snyder Bulik, who has written many articles for websites such as FiercePharma, Advertising Age, and Endpoints News, some of these corporations have made notable efforts to reduce prices for their customers. After hearing complaints from stakeholders about the lack of affordability of their insulin, Novo Nordisk agreed to develop a plan to make their products more accessible. The company began an emergency supply program where people with diabetes at risk for insulin rationing can get a one-time, one-month supply of insulin. They have also begun the My$99Insulin program, where people with diabetes who meet certain requirements are eligible to pay only $99 for a one-month supply of insulin. Sanofi has a similar $99-per-month subscription plan (FiercePharma).

Despite these efforts, there is still much progress to be made. For example, in an article published in late 2021, “25% of the seven million insulin patients in the United States… struggle with its high costs” (Health Policy Watch). That is approximately 1,750,000 people; some have gone to great lengths to obtain their necessary and life-saving medication.

Only a few years ago, a Tennessee family could not afford their mortgage payments and the insulin their daughter, Ila Adcock, needed to live (The Lancet). They sold their home, one they had built “from the ground up” (FOX 17). This was the length this family had to go to afford the medication their daughter needed to survive. Fortunately, Ila’s family is now in a more stable financial situation. Ila’s mother, Shannon, shared some of her feelings about the high cost of insulin and how it has affected her family. “She hopes for a day when a diabetic’s life expectancy isn’t determined by how much is in their wallet” (FOX 17). Unfortunately, this is one of the more fortunate scenarios to result from the lack of access to insulin. Despite resorting to selling their home, the Adcocks ended up better off than many other families in similar predicaments.

In 2017, the lack of access to affordable insulin resulted in the death of 26-year-old Alec Holt. Alec was 24 years old when he was diagnosed with Type 1 Diabetes, which is more on the older end of the spectrum for a diagnosis. The transition into full-time diabetes management “was a big adjustment,” but Alec worked to keep his diabetes under control and rose to the challenge (PBS). When he was 26 years old, he moved out of his parents’ home and into his own apartment. Alec was aging out of his parents’ health insurance and had recently received a raise that would prevent him from receiving help from patient assistant programs or Affordable Care subsidies. He was struggling to afford his insulin, which, without his parents’ insurance, cost approximately $1,300, but he chose to ration what he had and not tell his family. He planned to continue like this until he got paid and could afford more insulin. Seven days after his mother, Nicole Smith-Holt, had last seen him, his body was found in his apartment. Because his body was not receiving enough insulin, he went into diabetic ketoacidosis and died shortly after (PBS).

Two years later, in 2019, 21-year-old Jesimya “Jesy” David Scherer-Radcliff suffered the same fate as Holt. In an article written by Jesy’s mother, Cindy Boyd, on the blog T1International, we learn that Jesy was first diagnosed at age 10. On April 3, 2019, Jesy called his family and asked them to pick up his insulin prescription from the pharmacy for him. He had run out and resorted to insulin rationing while waiting for his next paycheck and had become incredibly sick in the meantime. His family rushed him to the hospital after seeing his deteriorated condition, and he was able to recover and return home. In June of the same year, he called in sick to work. When his mother found this out, she tried unsuccessfully to contact him throughout the day. By the time she got to his apartment, Jesy’s roommate had called 911, but Jesy was already dead. The same month Jesy died due to insulin rationing, four other known deaths were due to the same cause.

People with diabetes in the United States resort to insulin rationing for many reasons. When people with diabetes turn 26 years old, they are removed from their parents’ insurance and are left to get their own or go without insurance, as was the case in Alec Holt’s situation. Others receive pay raises that put them just above the maximum requirement for receiving Affordable Care subsidies, even though they still need the assistance. In many other cases, people with diabetes receive pay cuts that prevent them from affording their medications, similar to what happened to Jesy-Sherer Radcliffe.

These stories are both daunting and terrifying. These people and their families were hard-working and resilient individuals. They were normal people leading normal lives. Unfortunately, these are just three of the countless stories of people who have had to take drastic measures or have died because of the high cost of insulin. And this is not a recent issue. In 1939, 45-year-old Josephine Tomasovic resorted to illegally selling alcohol to have enough money to buy the insulin she needed and was later arrested (The Lancet). Tomasovic’s story shows that this is an issue that has been occurring for years.

Insulin and other diabetes-related supplies are frequently sold on the black market because this is the only way they can be accessed for some. Many also resort to traveling outside the country to purchase more affordable insulin. For example, my family and I drove to Surrey in British Columbia, Canada in February of 2020, just before the world shut down for the COVID-19 pandemic. We had yet to meet our annual insurance deductible and needed to buy more insulin. If we were to have purchased a one-month supply at our local pharmacy in the United States, it would have cost us around $1,500 for the insulin alone. By traveling to Canada, we purchased a three-month supply for between $500 and $600. The cost of insulin in Canada was 11% of the cost in the United States. And we are not the only family to have done this. Some will also cross the border into Mexico. According to an article from Kaiser Health News, Michelle Fenner, whose son has Type 1 Diabetes, decided to do just this. To purchase a three-month supply of insulin in the United States, she would have needed to pay around $3,700, while it would cost only $600 in Mexico (Kaiser Health News). Unfortunately, once the COVID-19 shut-downs were in effect, we could not simply drive across the border to purchase insulin because of the border closures. My family and countless others were left to buy insulin solely in the United States at the prices offered at local pharmacies.

Something needs to be done about these issues. Something needs to be done to make insulin more affordable to those who need it to survive. According to Dr. Kevin Riggs, a professor of medicine at Johns Hopkins University, possible explanations for the high costs are constant efforts to improve insulin and the lack of a generic option (National Public Radio). One way this price reduction may occur is through the production of biosimilars. Insulin patents have begun to expire in recent years. Once these patents expire, other companies can produce insulin that works almost exactly the same as the original and sell it for a significantly lower price. One example is Basaglar, a biosimilar version of Sanofi’s long-acting insulin, Lantus. Basaglar functions like Lantus but has a lower sales price than the original. It is important to note that “the FDA does not refer to Basaglar as being a biosimilar” (Prescription Hope). For a medication to be labeled as a biosimilar by the FDA, the original drug must be introduced under the Affordable Care Act, which Lantus was not (Prescription Hope). The price difference between Lantus and Basaglar, without insurance, is $99, with Lantus priced at $425 for five pens and Basaglar priced at $326 for five pens (Prescription Hope). With insurance, however, Basaglar could cost as little as $10 for five pens. While Basaglar is still expensive when paid for without insurance, it is still cheaper than Lantus and is a substantial step in the right direction.

Once more insulin patents expire, there may be increased competition and accessibility to these drugs (The Lancet). However, there may not be as dramatic a price difference as one hopes for. When generic versions are made of other medications on the market, there is often a price reduction of 80%. However, insulin costs might be reduced by 40% (National Public Radio). While this is a significant statistic and improvement, the products are still expensive.

In an article by the Endocrine Society, the authors discuss some ideas of what should be done in terms of legislation. They propose the following policy changes: greater transparency in the industry, “limit[ing] future list price increases,” “allow[ing] government negotiation,” limiting out-of-pocket costs, eliminating rebates, speeding the process of insulin biosimilar approval, providing current benefit information, and developing a payment plan for those on certain Medicare plans to reduce copays. The article takes a professional and formal stance on the changes it believes should be made.

The issue of high insulin prices needs to be addressed, whether through the production of biosimilars, price-capping legislation, or more emergency supplies. Insulin prices and the lack of legislation surrounding them are affecting millions of diabetics in the United States, and there should not need to be another tragic story to convince others of this.

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